LATEST NEWS

Today we’re delivering another M.E. awareness and education outreach session to general practice nursing students at Ulster University.   These sessions are so important in helping future healthcare professionals develop a better, evidence-based understanding of myalgic encephalomyelitis — including the realities of living with it, its impact on daily life, and the need for compassionate, informed care.   All attendees will also receive our free, CPD-certified Discover M.E. learning resource packs to support ongoing learning and awareness beyond the classroom.   This session is being delivered by Linda Campbell and Rebecca Logan, and we are incredibly grateful to both of them for giving their time, expertise, and commitment to raising awareness of M.E.   Every conversation helps to break down misconceptions, increase understanding, and move us one step closer to better recognition, support, and specialist services for people with M.E.   2/12/2025

Following contact from several of our members who found their experiences on the My Care App distressing and dismissive, we have now submitted an official complaint and feedback to the My Care App team.   Concerns were raised when members discovered that the app would not accept Myalgic Encephalomyelitis (M.E.) and instead only offered limited or outdated terminology when entering their diagnosis.   Digital health systems should support accuracy, not reinforce outdated or dismissive narratives around M.E. People living with this condition already face significant barriers to recognition, understanding, and appropriate care, and this makes correct representation in digital systems even more important.   We are very grateful to those who got in touch with us about this. Your experiences continue to shape and strengthen our work. We will share further updates once we receive a response.   Read the full submission via the My Care App Feedback form:    Dear Helpdesk Team     The charity has received concerns from a number of our members who recently attempted to enter their diagnosis of Myalgic Encephalomyelitis (M.E.) within the “other illnesses” section of the My Care App.    The system would not accept “M.E.” or “ME/CFS” or “Myalgic Encephalomyelitis” as a valid condition. The only related options offered was “Chronic Fatigue Syndrome” with four levels of severity or "ME Association member."   As the main charity in Northern Ireland, campaigning for specialist M.E. services, providing educational outreach to healthcare providers and working alongside GPNI,  QUB and Ulster University on M.E. awareness and education for medical and nursing students, we respectfully request-    Myalgic Encephalomyelitis (M.E.) / ME/CFS is added as a recognised condition on the My Care App. That the terminology used aligns with NICE guidance and international best practice.   “Chronic Fatigue Syndrome” is not in line with current NICE guidance, which uses the internationally recognised name Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and acknowledges Myalgic Encephalomyelitis as a neurological condition in its own right. For many patients, being forced to use inaccurate or outdated terminology undermines the seriousness of their condition and perpetuates misunderstanding within healthcare settings.   We believe new digital health systems should support accuracy, not reinforce outdated or dismissive narratives around M.E., as patients with this condition already face significant barriers to recognition, understanding, and appropriate care.   We would be grateful if you could kindly confirm how this issue will be rectified.    Thank you for your attention to this matter.         26/11/2025 Update on My Care App N.I. - M.E. Listing Correction We are pleased that the My Care App team has responded positively and agreed to address the outdated “Chronic Fatigue Syndrome” listing, which is currently the only option available for people with M.E. when selecting their condition from the drop-down list. Thank you to the members who raised this issue with us. By doing so, you have helped highlight an important gap, and we hope this has also increased awareness with the software developers at Epic, who design the system. As we have said before, people living with M.E. already face significant barriers to recognition, understanding, and appropriate care. That is why accurate representation in digital health systems is not just important — it is essential.    The reply from My Care App Team below.  “Thank you for getting in touch with us and alerting us to how this feature of My Care is displaying incorrect wording.  I have raised this with our technical team who have informed me that this list of conditions is provided by Epic, the software company who created My Care.  The technical team have given your feedback to Epic who will review it and make the necessary changes in their next update. Unfortunately we do not have a timescale at this time for when this update will be made and will keep you informed when we know more.”    Many Kind Regards, Xxxxxxxxxxxx Manager – My Care Help Desk   21/11/2025      Back to Top

  Sincere thanks to Adam Broderick @Broken Battery for capturing this short clip from the Westminster Debate on #ME on 19th November 2025. 👉 Watch Jim Shannon MP's contribution Here     The charity contacted all Northern Ireland MPs last week to inform them of the debate and to request representation for our Northern Ireland M.E. community.  We are grateful to Jim Shannon MP and Carla Lockhart MP for attending.  Transcript of Jim Shannon’s speech below, calling for #ME research in Queen's University Belfast and highlighting the facts-  Northern Ireland remains without an M.E. Clinical Lead,  No specialist services  No commissioned care pathways, despite rising numbers of people meeting the criteria for M.E.    I commend the hon. Lady on bringing this debate forward. In Northern Ireland, the figures for ME have unfortunately risen from 7,500 to 12,500 in the past few years.  We have no clinical lead, no specialist services and no commission care pathways.  We need research. Queen’s University Belfast is really good with research partnerships. Does the hon. Lady agree we should spend the money on research and find the cure?  It has been said that the cure for cancer will come in 10 years’ time. The cure for ME could come too if research money were put into it.   Full debate YouTube video by Adam Broderick Here Hansard ME Debate transcript. Here       20/11/2025

Thank you to the Deputy Chairperson of Newry and Mourne District Council, Geraldine Kearns, for formally welcoming our speakers—Professor Chris Ponting, Dr David Tuller, and Professor Tom Trinick OBE—to our in-person and online event in Newry on 8 November 2025, “M.E. Challenging Misinformation – Championing Real Research.”   We are also grateful to her for launching our new 2025 interactive website, designed to provide healthcare professionals and students with high-quality educational resources, and to offer hope and support to the M.E. patient community across Northern Ireland.   8/11/2025

Our Christmas gatherings are open to members, their carers, family and friends!    Dates and Venues Newry  21st November - Mourne Country Hotel - 6.00pm Belfast 3rd December  - Horatio Todd's - 6.00pm Online 9th December - Home delivery Christmas dinners available during December               Please Contact us to book and more details.                  

🌿 FREE Chi ME Sessions - see full details on our Members Only FaceBook Page - Starting Monday 17th November 2025 🌿   We are delighted to offer four weekly online Chi ME sessions, completely free for our members. 💜 ✨ What to expect: Chi ME combines gentle, flowing movements with mindful breathing to encourage relaxation, balance, and improved wellbeing.   These sessions can be enjoyed from bed, seated or standing — ideal for anyone managing limited energy. 🧘‍♀️ Led by: Accredited Chi ME Instructor 🗓️ Starts:  Monday 17th December 2025  💻 Where: Online Join us for calm, connection, and gentle movement in a warm, supportive space. 🌸   🌼 About Chi ME Chi ME is an adapted form of Tai Chi designed to be accessible for people with energy-limiting conditions, including M.E. and fibromyalgia. The slow, mindful movements can help ease tension, support posture and flexibility, and promote a sense of peace — all at your own pace.   Contact us for full details.    Back to top

🎄 Hi, I’m Gary, a volunteer for Hope 4 ME & Fibro N.I. For the past six years, I’ve organised online raffles to support our charity.   In previous years, the proceeds from my raffles have helped fund educational conferences, healthcare provider and medical student information packs, awareness events and much more!   This year, I’m organising our Christmas raffle to fund festive dinners delivered to members who are housebound, bed-bound, isolated, or rarely able to get out — as well as an online Christmas party and in-person events in Newry and Belfast, so all of our members, no matter what their level of disability, can join in to share in the joy of the season.   Raffle tickets are just £3 each - 1st Prize - £100 Cash 2nd Prize - Luxury Self-Care Hamper (worth over £100) 3rd Prize - £50 Cash 4th Prize - £50 Cash 5th Prize - Gents Gift Set & Large Christmas Teddy The prize-winner draw will take place live, during our online Christmas party on 9th December 2025. Enter the 'Give As You Live' raffle Here   Thank you to Ruairi McLoughlin for his kind cash donation prizes and Gary and family for the self-care hamper and men’s gift set. The prize-winner draw will take place live, during our online Christmas party on 9th December 2025. Thank you! 😊    Back to top  

💙 Huge thanks to Linda Campbell and Rebecca Logan for delivering an excellent 90-minute educational session to Advanced Practice Nursing students at Ulster University on 6th November 2025. Pictured above with Ulster University Lecturer, Lead for Advanced Practice module/course.  This was part of our ongoing outreach to help close the gap in M.E. awareness and training across healthcare education — an area that has been overlooked for far too long. All attendees received free CPD-certified packs from the Discover M.E. project, and the film was shown during the session, prompting discussion about how best to support people living with Myalgic Encephalomyelitis. Rebecca joined online due to her continuing struggle with Covid-induced M.E. — her commitment and insight are deeply appreciated. Thank you to everyone who took part and to Ulster University for recognising the importance of educating future healthcare leaders about this neglected and misunderstood illness. 💙 Together we’re making progress in Northern Ireland, ensuring M.E. is better understood, recognised, and supported. #Hope4MEFibroNI #MEAwareness #MyalgicEncephalomyelitis #fibromyalgia #UlsterUniversity #NursingEducation #DME #volunteers #PEM

We’re pleased to share that, on behalf of our members, Hope 4 ME & Fibro NI has donated US $1,000 to the University of California, Berkeley’s crowdfunding campaign “Trial By Error – Fall 2025” led by Dr David Tuller.   This contribution supports Dr. Tuller’s ongoing work challenging flawed #ME research and advocating for better recognition and specialist services for people with ME/CFS and related conditions.     Dr David Tuller – Champion for Evidence-Based ME/CFS Research Affiliation: University of California, Berkeley – Center for Global Public Health Project: Trial By Error Website: crowdfund.berkeley.edu/project/47768 Blog: Trial By Error – Virology Blog   Who He Is: Dr David Tuller, DrPH, is a public-health researcher and investigative journalist based at UC Berkeley. Formerly with The New York Times and Salon, he now focuses on exposing poor science and promoting rigorous, ethical research in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID.   Key Achievements PACE Trial Investigation (2015): His exposé “The Troubling Case of the PACE Chronic Fatigue Syndrome Study” revealed major methodological flaws in the influential UK PACE trial, which had promoted CBT and GET as effective treatments. → Read summary Ongoing “Trial By Error” Series: Since 2015, Tuller’s blog has provided detailed, referenced critiques of flawed ME/CFS and Long COVID studies, ensuring academic accountability and transparency. → Trial By Error on Virology.ws Advocacy for Patients & Research Integrity: Works with international scientists, patient advocates, and charities to press for biomedical understanding, highlight harms from GET, and challenge biased “biopsychosocial” models. → Health Rising profile   Focus Areas Scientific Integrity – exposing weak or unethical research practices. Post-Exertional Malaise (PEM) – ensuring this hallmark symptom is recognised in trials and clinical guidelines. Research Policy & Guidelines – monitoring NICE, Cochrane, and international studies. Long COVID – warning against repeating ME/CFS research mistakes.   Why It Matters Tuller’s work has helped reshape international understanding of ME/CFS, contributing to: Revision of UK NICE guidelines (2021) removing GET. Greater recognition of biomedical mechanisms. Informed patient advocacy for appropriate specialist services — vital for Northern Ireland and beyond.   Hope 4 ME & Fibro NI’s Connection We were honoured to welcome Dr Tuller at our 2017 Stormont Conference and again in 2018 Newry with Professor Brian Hughes.       Back to top

Awareness & Information 90-minute Session on Myalgic Encephalomyelitis & The Patient Experience   Hope 4 ME & Fibro Northern Ireland is pleased to continue its programme of educational outreach within healthcare training, providing insight into Myalgic Encephalomyelitis (M.E.) for future healthcare professionals.   On Thursday 6th November 2025, our representatives Linda Campbell and Rebecca Logan will deliver a presentation to Advanced Practice (Nursing) Students at Ulster University, focusing on the lived experience of patients and the challenges surrounding recognition and management of this complex, multisystem disease.  The session will include an evidenced based, slide presentation delivered by Linda with Rebecca joining via live link to convey her experience of Long Covid-induced M.E. The Discover M.E. Film will also be screened (with accompanying CPD-certified M.E. education packs for all attendees) and a Q&A will also be facilitated.    The short, animated film, Discover M.E., was commissioned by our founder Joan McParland in 2019, who coordinated the content to ensure her lived experience of M.E., and that of our charity members in Northern Ireland, could continue to be readily shared. Produced and directed by Professor Deepa Mann Kler, the film captures the invisible realities of M.E. with honesty and compassion. Joan now uses the film to speak for her and others when her health prevents her from doing so directly.    These educational sessions form part of the charity’s ongoing work to promote accurate understanding, empathy, and the development of specialist services for people living with M.E. across Northern Ireland.   Hope 4 ME & Fibro NI welcomes opportunities to deliver similar awareness and education sessions to universities, healthcare teams, and professional training programmes across the region, delivered online or in-person depending on location.    Enquiries are invited from institutions wishing to enhance M.E. awareness within their curriculum or staff development programmes. Contact us Back to top 3/11/2025

Join us! Dr Tuller & Prof Ponting tackle M.E. stigma, bad science & DecodeME insights. Real research-real hope for Northern Ireland patients.   Saturday, 8th November 2025 -  7.00pm to 8:30pm     Check-in from 6:30pm Free parking at venue. Clear accessibility to meeting room on ground-floor level. Location - Mourne Country Hotel52 Belfast Road, Newry, BT34 1TB Book through Eventbrite -  Here   For 14 years, Hope 4 ME & Fibro NI has campaigned for specialist M.E. services in Northern Ireland and championed our members to take part in the DecodeME study, placing N.I. patients at the heart of world-leading ME research.   We are delighted to welcome Dr. David Tuller back to Northern Ireland, with Prof Chris Ponting (via live link) as they explore how flawed research has fueled stigma, disbelief, and poor care — and how patient-centered science is transforming the understanding of M.E. Also joining the panel of experts is Professor Tom Trinick, Medical Advisor, Hope 4 ME & Fibro Northern Ireland is a respected consultant in metabolic and nutritional medicine, with many years of experience within the Northern Ireland health system.   Q&A session will be facilitated- don't miss this unique opportunity to hear directly from the experts and have your questions answered.   Light refreshments available from 6.30pm (free for charity members or £5 payable on the night for non-members) After the speaker presentations join us for the official launch of our new website! Designed by patients and featuring co-produced materials with the HSC Clinical Education Centre (HSCCEC) and General Practice Northern Ireland (GPNI) and more!   The site offers trusted resources, and combines lived experience with clinical insight, and provides accessible and downloadable guidance for patients, carers, and practitioners alike. We will demonstrate key features and outline its role in improving understanding of Myalgic Encephalomyelitis (ME) Fibromyalgia and Long Covid-induced M.E., and how this initiative aims to support better patient outcomes across Northern Ireland.   Frequently asked questions:   Q. Should attendees take infection control measures?  A. Attendees are encouraged to wear a face mask for the safety of all participants. Hand sanitiser will be provided. Please refrain from attending if you are experiencing any cold or flu-like symptoms.   Q. Do you need to lie down due to medical reasons (ME/POTS/OI) during the event? A. Please let us know in advance and a comfortable camp bed will be made available at the back of the meeting room. Patients must supply own pillow and blanket if required.   Accessibility  Clear accessibility for wheelchair users as meeting room is on ground floor.   Back to top 19/10/2025

Our specialist speaker for November is Chris Meneilly, Independent Living Advisor from the Centre for Independent Living Northern Ireland (CILNI)   CILNI provides vital support to help people live independently, offering guidance, advocacy, and help with Direct Payments and self-directed support and more!    Q&A session will be facilitated for members and their carer's questions.    We look forward to seeing you!      29/10/2025

💙 Proud Moment for Northern Ireland 🌍 Hope 4 ME & Fibro N.I. is thrilled to announce that TWO of our educational resources have been reviewed, evaluated, and approved for inclusion in World ME Alliance new pilot Medical Education Hub.   This international hub is designed to provide trusted, high-quality resources for healthcare professionals to better understand and care for people living with Myalgic Encephalomyelitis (M.E.).    We’re honoured that materials created right here in Northern Ireland are helping to raise awareness and improve clinical care on a global stage.    A heartfelt thank-you to World ME Alliance for recognising their value.   The two trusted, CPD-certified resources are-  1/ Discover M.E. Digital Learning  2/ GPNI - ME Clinical Update  World ME Alliance is a collaboration of 28 organisations in 21 countries 🌍  See World ME Alliance Medical Education    25/10/2025

DecodeME has found that your genes contribute to your chances of developing ME/CFS. On 6th August 2025, the University of Edinburgh published the initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome " The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share.    Main findings from our analysis  Your genes contribute to your chances of developing ME/CFS.   People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.   Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS.   The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.   At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.    Results Summary Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, disabling illness. It affects more females than males, and in most cases, starts after an infection. Little is known about the biological mechanisms that cause ME/CFS, despite many attempts to uncover them, and it has no effective treatments.   To understand ME/CFS better, our study, DecodeME, compared the DNA of 15,579 people with ME/CFS with the DNA of 259,909 people without ME/CFS, all of European descent. DNA is a molecule that makes up our genes.   Our genes make many different molecules called proteins, each of which does very specific things in the body. Finding variations in genes that differ between people with or without a disease can therefore point to what causes it. We found that people with ME/CFS are more likely to carry certain DNA differences in eight regions of their genome, and so these variants tell us about possible biological causes of ME/CFS.   However, as these differences are also often found in people without ME/CFS they cannot cleanly separate who is at risk and who is not, and therefore do not provide a definitive test. Most of these regions contain several genes. Our methods did not allow us to conclusively locate the ones most relevant to ME/CFS in each region, but public data allowed us to pick out the most likely ones. Three of the most likely genes produce proteins that respond to an infection. Another likely gene is related to chronic pain. None are related to depression or anxiety.   We found nothing to explain why more females than males get ME/CFS. Overall, DecodeME shows that ME/CFS is partly caused by genes related to the immune and nervous systems.    Find the full preprint paper.     We also have our FAQ page for further information.    You can read more about the science behind the results.   Messages from the DecodeME team:     Andy Devereux-Cooke,  DecodeME co-investigator (Patient and Public Involvement), DecodeME management team   “DecodeME has revealed genetic results, which should prove game changing in the ME/CFS research field, and that also align with decades of patients reporting on their experiences. These results will not mean that a test or cure will be developed straight away, but they will lead to a greater understanding of ME/CFS. DecodeME also shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.”    Sonya Chowdhury, CEO Action for ME, DecodeME management team   “These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets. This brings ME/CFS in line with other long-term diseases which have genetic components. We are shining a laser light on eight precise areas of DNA, so that highly focussed research can now be carried out. We hope this attracts researchers, drug developers, and proportionate funding to ME/CFS – and speeds up the discovery of treatments.”     Professor Chris Ponting, DecodeME lead investigator, University of Edinburgh  “This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access. We especially welcome researchers whose work is relevant to the eight signals we have identified, and who could bring their expertise to bear in highly targeted studies that would produce further ME/CFS insights and ultimately treatments.”    Researchers can find out more about our data access policy here. " What’s next?    Join us for a webinar on Thursday 14th August, where we will explain further what has been found and answer your questions.    The DecodeME team will continue analysing our rich dataset and will publish more findings as soon as they become available.   We also continue to encourage other researchers to make use of our dataset, so that they can build on what we have found.  A final word of thanks    This research would not exist without the tens of thousands of people with ME/CFS who took part in DecodeME, often whilst experiencing pain, fatigue, and brain fog.    Thank you for making these discoveries possible. Useful links    Sign up to our results webinar with the DecodeME management team     Read our Frequently Asked Questions for further information     Find our published preprint paper in full here    For researchers, find out more on how to access the ME/CFS data set     

Thank you to our member Diane Corrigan for sharing an important message ahead of Fluoroquinolone Toxicity Awareness Day, highlighting the risks linked to these antibiotics and their connection to M.E.   The second Fluoroquinolone Toxicity Awareness Day takes place on 22nd October. This is a worldwide event created by a young lady in the USA called Talia Smith who has been severely harmed by a Fluoroquinolone Antibiotic. Talia has a large social media presence and website This is Floxed she presents a show available to watch on YouTube Here A committee is set up each year which comprises of volunteers representing countries from around the world who each focus on rallying their own country to participate. As some members of Hope 4 ME NI may already know I too have been iatrogenically harmed by the Fluoroquinolone antibiotic Ciprofloxacin which actually triggered my M.E. I am the representative for U.K.  again this year. The objective is that on Awareness day we get as many people, all over the world, to flood social media with posts on Fluoroquinolone Toxicity, so that when anyone is on their socials that day they will see at least one post, that way we will truly raise awareness and get the word out.    The more we can do more to raise awareness about the dangers of fluoroquinolone antibiotics some of which are Ciprofloxacin, Levofloxacin, Moxifoxacin and Ofloxacin.  Our friends in the USA are currently celebrating the fact that the Centre for Disease Control (CDC) recognised fluoroquinolone toxicity as a diagnosis and the actual ICD codes came into practice there on the 1st October this year.    Unfortunately in the U.K we do not have ICD code yet.  In fact, here in the UK we still have doctors (at all levels) saying things like "the pains can't be from the Fluoroquinolone antibiotic as it will have left your body after 3 weeks". This is despite the packet leaflet stating that Ciprofloxacin and its siblings can cause "Prolonged, disabling and potentially irreversible serious side effects" and that "Inflammation and ruptures of tendons may occur within the first 48 hours of treatment and even up to several months after stopping of Ciprofloxacin tablets therapy."     Fluoroquinolone Toxicity, is formally described as mitochondrial damage. They cross the blood brain barrier and make it into our cells, which means the antibiotic penetrates into the mitochondria, leading to oxidative stress (free radicals), mitochondrial damage, reduced ATP (energy at cellular level) and epigenetic.    If you're prescribed an antibiotic just check if it's a fluoroquinolone, the packet leaflet will say but the pharmacist - or doctor should actually warn you before giving them to you but unfortunately they generally don't. There are mutiple Medical Health Regulatory Authority (MHRA) warnings on these antibiotics, the most recent in January 2024 stating must now only be prescribed when other commonly recommended antibiotics are inappropriate. The MHRA released in June this year their Public assessment report entitled Review of risk minimisation for disabling and potentially long-lasting/irreversible side effects associated with fluoroquinolone antibiotics which although was much needed more still needs to be done.    It is somewhat disappointing that not all regulatory actions to minimise risk are being implemented, the restricting on who can prescribe was not accepted and timelines or firm commitments with regards to the MHRA liaising with stakeholders so that warnings pop up with electronic prescribing have not been given. The European Medical Association’s (EMA) report published in 2019 acknowledged that fluoroquinolones cause mitochondrial dysfunction and cell damage, which are cited as the main reasons for the diverse and long lasting ‘side effects’.    Neither the EMA nor MHRA have ever included this information in their later DSUs yet it is available in the public domain. The result is that the majority of HCPs remain very sceptical about the levels of damage that can be inflicted by fluoroquinolones while we, the long-term sufferers, bang our heads against their professional stone wall.    The ME Association have also stated ‘The fluoroquinolone group of antibiotics are best avoided unless really necessary’.    Just because they are strong and effective does not warrant them being prescribed for a suspected infection or an infection where an alternative is more suited without potentially inflicting serious side effects which can cause life long disability.    If you have been or think you may have been affected you can obtain help, support and information from FluoroQuinolone Support U.K. Here   Disclaimer applies 19/10/2025 

Our Long Covid Representative, Rebecca Logan, BSc Honours Nursing, recently delivered an education session to second-year physiotherapy students at University College Cork. This was the fourth consecutive year she has been invited to contribute to the programme by Dr. Aaron Cole, Practice Education Tutor within the Discipline of Physiotherapy. This event took place on 14th October 2025   During the session, Rebecca shared her lived experience of developing Myalgic Encephalomyelitis (ME) following Long Covid, offering invaluable insight into the realities of managing these conditions. She spoke about the various treatments she has tried, the management strategies that help her cope, and her experiences with healthcare professionals — both positive and challenging.   Rebecca also provided practical advice for future physiotherapists on how to approach and support patients living with Long Covid and ME, emphasising the importance of understanding, pacing, and patient-centred care.   We are very grateful to University College Cork and Aaron Cole for continuing to include the patient voice in their physiotherapy education programme — and we are very privileged to have Rebecca representing Hope 4 ME & Fibro NI with such honesty and compassion.    (Rebecca is a former nurse and keep-fit instructor, pre-Covid infection, now medically retired)    Building Bridges to a Better Future    

Booking Link Coming Soon!    Dr David Tuller, investigative journalist and public health expert, has spent years exposing the flawed science behind major studies that have harmed patients. Prof Chris Ponting, Chair of Medical Bioinformatics at the University of Edinburgh and Lead Investigator of DecodeME – the world’s largest genetic study of ME – is working to uncover the biological foundations of the illness through rigorous, patient-centred science. (joining via live link)  Together, they’ll explore how misinformation and poor methodology have held back progress — and how real, respectful research is building hope for the future. #MyalgicEncephalomyelitis #Fibromyalgia #Fibromyalgia #FND    

From the M.E. Association  VuMedi Video: Diagnosis and Management of ME/CFS and Long Covid Dr Charles Shepherd, Hon. MEA Medical Adviser, has recorded this video for VuMedi which is an American medical education platform. This is a 20 minute video aimed at health professionals, covering all the key aspects of diagnosis and management of ME/CFS and Long Covid – where the symptoms overlap with ME/CFS. Watch the video: Here  

Daisy Hill Hospital in Newry have responded very favourably to an M.E. patient experience shared on Care Opinion concerning a visit to their Accident & Emergency Department. As a result, change is being made, by the hospital pledging to include M.E. in a patient-safety brief.    " Thank you for taking the time to share this feedback with us, we appreciate the time you have taken to do this and we want to assure you that we welcome and value all feedback. We do hope that you are recovering from the injury which you sustained and which resulted in you having to attend our Emergency Department. Thank you for your kind words regarding the care you received for your injury and for your words of appreciation for the staff.  We appreciate that you face so many challenges in dealing with Myalgic Encephalomyelitis (M.E.) over such a prolonged period and your story provides an insight into what it is like for you to live with and manage this condition.   We are sorry that you are experiencing post-exertional malaise (PEM) as a result of your attendance at our Emergency Department and of having to remain in an upright position. Unfortunately our Emergency Departments are frequently overcrowded and do present significant challenges for patients and staff, particularly in relation to seating spaces and we apologise for the discomfort that you experienced.    Please be assured that we will share your feedback at our safety brief and we will encourage our staff to increase their awareness of M.E….by accessing information at the ME association - ME/CFS About - The ME Association. Your own personal information also provides valuable insights for our staff on living with M.E We thank you again for this feedback and we wish you well in your recovery."   Read the full Care Opinion Story:  Here

7th October 2025 - Monthly Meeting - Thanks to feedback from our members we are resuming the guided breathing and meditation sessions designed to help:   Calm the nervous system Ease anxiety and overwhelm Improve sleep and relaxation Reconnect with your body and breath Experience the joy of connecting with others who truly understand.   Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm   Led via Zoom by specialist facilitator Lisa, these gentle, accessible sessions are suitable for all energy levels — and will accommodate our house or bed-bound members from all across the Region.    Exclusive to our members, the Zoom link will be posted on the 'Members Only' FaceBook Page and sent out by email.   NB: Always consult a qualified healthcare professional before making any decisions about treatment or management options.

1-hour CPD-certified clinical update webinar on Myalgic Encephalomyelitis (M.E.) Professional and Lived Experience – is an essential (free) educational resource for every GP surgery team in Northern Ireland. We are delighted this resource is now available to healthcare providers outside of Northern Ireland and accessible by contacting the charity directly.   The session is designed to empower primary care teams in the assessment, diagnosis, support, and treatment of M.E., in line with the updated 2021 NICE guidance (formally endorsed and adopted for use in N.I. Jan 2022) The panel of respected clinicians bring both professional expertise and personal insight.   Speakers: Dr Nina Muirhead – Dermatologist, textbook co-author, and expert witness to the 2021 NICE ME/CFS Guideline Dr Robin Kerr – GP, Lead at a Rapid Cancer Diagnostic Centre, and contributor to the Scottish EAVE-II research   Linda Campbell – Advanced Nurse Practitioner, Hope 4 M.E. education advisor, and Mother of an adult son, living with M.E.     Access to webinar:   ➡️  Registration to GPNI Mailing List is required for Northern Ireland healthcare professionals. Give feedback and obtain a certificate of attendance for appraisal.    ➡️ Watch via the GPNI portal → Clinical Updates  → Search → ME/CFS  Here               (Password protected)    ➡️ Healthcare providers outside of Northern Ireland                                                             (Password protected)  Contact us                                                                                                                                                                                    ➡️ The presentation slides are freely available:  Here     We are encouraged to hear from patient reports how this new GPNI M.E. Clinical Update is bringing benefits in their care. Please keep sharing the news of this unique opportunity with your healthcare providers.     With kind permission from Action for M.E. to use Learn About M.E., Hope 4 ME & Fibro NI organised the expert speakers and delivered a live session, along with a tailored recording. We are grateful to GPNI for hosting this important M.E. clinical update..   6/3/2025  Back to top  

Healthcare provider M.E. education - 3 high-quality, evidence-based resources co-produced with healthcare partners — designed to improve M.E. understanding and care in Northern Ireland and beyond. (all free resources)   Discover M.E. e-learning Designed for GPs and allied health professionals. Learn the latest on diagnosing and managing M.E. Access here: https://tinyurl.com/HOPE-DME   M.E. Clinical Update Webinar (with GPNI) A 60-minute webinar for healthcare providers covering current best practice. Healthcare providers Only:  M.E. Webinar Series (5 parts) Covers key aspects of M.E. diagnosis and care. Previously available on HSC CEC Page Tiger (2021-24) is now available on our YouTube Channel. While aimed at clinicians, some sessions may be useful for patients and carers too. Access here  M.E. Webinar Series Recognise – Diagnose – Support M.E. 

2nd September 2025 Monthly Meeting - Tina Calder- 'My Journey with Fibromyalgia & The Skinny Jab'   Our monthly meetings resume on Tuesday 2nd September 2025 with this month’s guest speaker Tina Calder, who will be sharing her personal journey with Fibromyalgia and her experience with ‘the skinny jab.’   Tina’s talk will offer an honest insight into living with Fibromyalgia , the challenges she has faced, and the many approaches she has explored along the way and includes a friendly Q&A.   Please note: this is one patient’s personal story, shared for information purposes only. It is not intended as medical advice or a recommendation.   Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm   Exclusive to our members, the Zoom link will be posted on the 'Members Only' FaceBook Page and sent out by email.   NB: Always consult a qualified healthcare professional before making any decisions about treatment or management options.

Regional marking of #SevereMEDay    Thank you to Mid Ulster District Council for lighting up 3 landmark Council Buildings in blue to raise awareness for the sickest in our community.    World ME Alliance explain why it is vital to raise awareness for the sickest in our community on 8th August :   #SevereMEDay   "Around 25% of people with ME/CFS experience severe or very severe symptoms. These individuals may: - Be unable to speak or tolerate conversation - Need assistance with all aspects of daily care - Experience intense pain and energy loss, gastrointestinal issues, and orthostatic intolerance - Be unable to tolerate standard medical environments or interventions   Despite their level of disability, they are frequently overlooked by healthcare systems and society."   Please help us to raise awareness of this debilitating condition this Severe ME Day.

Causeway Coast & Glens Borough Council lit up their Civic Headquarters in blue to mark Severe ME. Day, 8th August 2025.   Severe M.E. is being marked in Northern Ireland today to raise awareness for people here living with the most severe form of Myalgic Encephalomyelitis (ME)    25% of all adults and young people with #ME endure years and decades of being bed-bound, unable to tolerate light or sound and more, and are hidden from the world.    There are no specialist #ME services in N.I.   World ME Alliance explain why it is vital to raise awareness for the sickest in our community on 8th August  :   #SevereMEDay   "Around 25% of people with ME/CFS experience severe or very severe symptoms.   These individuals may: - Be unable to speak or tolerate conversation - Need assistance with all aspects of daily care - Experience intense pain and energy loss, gastrointestinal issues, and orthostatic intolerance - Be unable to tolerate standard medical environments or interventions   Despite their level of disability, they are frequently overlooked by healthcare systems and society."

A quote on DECODE ME Study results, from Dr. William Weir, Medical Advisor to Hope 4 ME & Fibro Northern Ireland.   He is a retired NHS consultant in Infectious and Tropical Diseases, formerly at the Royal Free Hospital in London.  Dr. Weir was honored with the Queen’s Award for Voluntary Service, attending a Buckingham Palace Garden Party in 2022- marking his voluntary contributions to Hope 4 ME & Fibro N.I. since 2014. He served on the UK government’s CFS/ME Working Group (1998–2002), advising the Chief Medical Officer, Sir Liam Donaldson. More recently, he contributed to the NICE ME/CFS Guideline Development Group, helping shape the official clinical recommendations in the UK.   Dr. Weir co-authored the influential paper “ME/CFS: Past, Present and Future” with Dr. Nigel Speight, offering a compelling critique of the psychological or biopsychosocial model and advocating for recognition of biological underpinnings in ME/CFS. He also authored “Life‑Threatening Malnutrition in Very Severe ME/CFS”, addressing critical clinical concerns for severely affected patients. Recognized as an Honorary Fellow by Doctors with M.E., Dr. Weir has supported the inclusion of scientific rigor and clinical relevance in ME/CFS research and practice—also featuring in the Wellcome Trust’s educational series Dialogues for a Neglected Illness.   Patients and community members commend his depth of understanding, compassionate approach, and emphasis on biomedical evidence over harmful dogma.  

This political support has secured a crucial meeting with the Minister to discuss how N.I. can move forward with the My Full Reality: ME/CFS Delivery Plan and the implementation of NICE Guideline for ME/CFS  (NG206)    After 7 years of campaigning (2011–2018), an M.E. Clinical Lead was finally recruited for N.I. — but the failure to deliver services left patients feeling abandoned and hopeless.   Another 7 years have now passed, with a shocking lack of progress and no specialist services in place.   People with M.E. in Northern Ireland have waited long enough — this meeting is a vital step toward meaningful change.   Thank you to every MLA who is standing with us — your backing is giving renewed hope to the M.E. community in Northern Ireland through political action.   

  Thank you to our incredible members and supporters who voted.   Hope 4 ME & Fibro Northern Ireland celebrates £2,000 Movement for Good Award    Hope 4 ME & Fibro Northern Ireland is celebrating after receiving a £2,000 boost from Benefact Group’s Movement for Good Awards, thanks to heartfelt nominations from the public. .   The £2,000 donation is part of Benefact Group’s annual campaign, which gives over £1 million to charities and good causes across the UK.   This generous support will help this all-volunteer-led charity, continue delivering impactful events, producing vital information resources, and ensuring that patients across Northern Ireland feel seen, supported, and empowered.   “We are incredibly grateful to receive this £2,000 grant, which will directly support our ongoing efforts to raise awareness, improve understanding, and advocate for better services for people living with M.E., Fibromyalgia and Post-Covid M.E. At Hope 4 ME & Fibro Northern Ireland, we’ve worked consistently from 2011 to give a voice to a community that is so often overlooked, providing education, support, and campaigning for urgent change. We are humbled and indebted to our incredible members and supporters who voted for the charity, thank you to all.”  Charity founder Joan McParland MBE   Mark Hews, Group Chief Executive of Benefact Group, said: “We want to thank everyone who nominated a good cause for our Movement for Goods Awards. Benefact Group is owned by a charity, and giving back is at the heart of everything we do - all our available profits go to good causes. Our mission is simple: the more we grow, the more we can give. “It’s a privilege to support this incredible organisation, who are making such a difference in their community. We know £2,000 can go a long way in changing lives, and we can’t wait to see the impact this funding will have.”   About Hope 4 ME & Fibro Northern Ireland Supporting and empowering patients Raising awareness & campaigning for specialist M.E. services Providing educational resources for healthcare providers and medical, and nursing students. For more information visit https://www.hope4mefibro.org/   Movement for Good is funded by EIO plc, part of the Benefact Group.    About the Movement for Good Awards Benefact Group’s Movement for Good Awards is giving away £1,120,00 to help charities change lives for the better in 2025. £350,000 will be donated in £1,000 grants throughout the year. The £1,000 awards are open to all UK-registered charities, not-for-profit organisations, or community interest companies. Anyone can nominate at any time for the chance to receive £1,000. £200,000 will be donated in £5,000 special grants throughout the year. £400,000 will be donated in larger amounts throughout the year. £120,000 will be distributed in December as part of the 12 Days of Giving initiative. £50,000 has been allocated for charities in an exciting new and innovative way called Pay It Forward. Movement for Good is funded by EIO plc, part of the Benefact Group.   For more information visit www.movementforgood.com   About Benefact Group Benefact Group is a specialist financial services organisation with a unique mission: to donate all its available profits to charity. As an independent group owned by the registered charity Benefact Trust, its diverse family of businesses - including Ecclesiastical Insurance - offers expertise in specialist insurance, investment management, and broking and advisory services across the UK, Australia, Canada, and Ireland. Over the past decade, Benefact Group has established itself as the third-largest corporate contributor to charitable causes in the UK, donating over £250m to charities since 2014.   Find out more here: www.benefactgroup.com  

2024 - 2025 Hope 4 ME & Fibro Northern Ireland’s submission to The Charity Commission for Northern Ireland is available on their website from today.  The following is a summary of our Trustee Annual Report with link below to the full document. Thank you to all who take part and support our endeavours. ————————————————— Advocacy, Strategic Engagement, Education & Patient Support 2024/25 Hope 4 ME & Fibro Northern Ireland continues to build vital bridges between the patient community, healthcare professionals, educators, and policymakers. Our consistent advocacy led to significant progress at multiple levels, reflecting our commitment to improving recognition, diagnosis, and support for people living with Myalgic Encephalomyelitis (M.E.) Fibromyalgia and post-Covid M.E.   In March 2024 and 2025, we met directly with the Department of Health’s Strategic Planning and Performance Group (SPPG) and the Public Health Agency (PHA) to highlight the urgent need for specialist M.E. services in Northern Ireland. in accordance with the NICE guideline on ME/CFS 2021, NG206 – already endorsed as applicable to Northern Ireland by the DoH N.I. These high-level meetings helped strengthen understanding of the patient experience and the gaps in current provision.    As a direct result of our advocacy, the Health Minister Robin Swann publicly endorsed our cause, lending his voice in a video message in support of our work—a significant milestone in gaining political and institutional recognition.   Further positive outcomes were secured, including the Public Health Agency N.I. sharing our series of 5 webinars (co-produced with the HSC Clinical Education Centre and a pledge to update NI DIRECT ‘A-Z Symptom Sorter’ content on M.E.   6th March 2025 we Co-produced a General Practice NI (GPNI) ME/CFS Clinical Update Webinar session, held for ALL GP Practices and staff across NI – accessible on an ongoing basis.    This year also saw the development of a comprehensive three-year strategy for our charity, setting out clear objectives to enhance awareness, influence policy, support biomedical research, and strengthen professional education. This strategic document is guiding our future actions and providing a strong foundation for partnerships and accountability.   In the field of professional education, we made meaningful progress by meeting with the Queen’s University Belfast (QUB) School of Nursing and Midwifery, paving the way for increased educational opportunities on M.E. for student nurses.    We also continued our longstanding collaboration with QUB’s School of Medicine, ensuring ongoing delivery of M.E. education to medical students—helping to address thecritical gaps in clinical understanding and awareness that have historically left patients underserved.   Alongside these advocacy and educational efforts, supporting patients remained at the heart of everything we do. We continued to provide connection, information, and emotional support through multiple Facebook groups tailored to different patient needs, as well as monthly online and face-to-face meetings, online Craft Group meetings and telephone information line.    These services are lifelines for many, offering understanding and community in the face of isolation and uncertainty. Together, these achievements reflect a year of purposeful action, strategic growth, and compassionate care.    Financial Statement 1/04/24 to 31/03/2025 Here   The full Charity Commission submission can be viewed HERE      

Discover M.E. is a short, animated film, produced and directed by Professor Deepa Mann-Kler, Chief Executive of NEON and Visiting Professor of Immersive Futures with Ulster University, who specialises in the use of immersive technologies for health.   Professor Deepa Mann-Kler (pictured here) directed and produced the film.       The Discover M.E. Experience has TWO parts:   Part 1 - A powerful virtual reality film that immerses viewers in the lives of six people in Northern Ireland with Myalgic Encephalomyelitis. Told in their own voices, it challenges misconceptions and reveals the stark reality of living with this disease. The film is available in two formats: a standard 2D version, or the unique VR headset version—an innovation that delivers the most immersive journey.   Part 2 - A fully CPD-accredited training resource, worth 3 CPD points, delivered through the Demystifying M.E.information pack. Designed for flexibility, it is available both online and in hard copy.  The pack draws on trusted sources, including the NICE Guideline for ME/CFS (NG206), alongside insights from world-leading researchers, clinicians, and specialist organisations—ensuring accurate, evidence-based learning.     Booking The Charity offers the Discover ME 2-Part Experience FREE to all healthcare providers and medical students.   Contact us to arrange your own digital, Discover M.E. experience, or book an in-person session for your healthcare team or medical student group by clicking here.    The Discover M.E. film was first premiered by Professor Mann-Kler at our 2023 Annual Conference in Stormont. It was subsequently incorporated into our annual M.E. Awareness event for medical students at Queen’s University Belfast, where it is now showcased alongside the screening of the award-winning documentary UNREST. From June 2025, the film has also be included as a teaching resource within the School of Nursing and Midwifery at Queen’s University Belfast. Watch below:     Winner of Awards To date, the film has won 4 international short film awards: Global Shorts Winner 2022 Best Shorts Competition Pinewood Liftoff Global Network Sessions 2022, and Delta International Film Festival 2022     Discover M.E. is a collaboration between Hope 4 ME & Fibro N.I., Silverink, Enter Yes, and Neon, with funding from NI Screen. Our members continue to fundraise to cover costs of the production and ongoing distribution of the hard copy information packs, Initially, 4 Virtual Reality headsets were funded by The Saturday Hospital Fund with another 2 being funded by an award from Danske Bank's employee, charity giving fund.    Back to top

My Full Reality: Delivery Plan for ME/CFS is published.  We are glad to see ME/CFS being acknowledged as a serious, long-term condition with significant impact—an important step toward shifting public and clinical attitudes. Read full plan Here   Hope 4 ME & Fibro Northern Ireland Charity Response.  Huge thanks to our Trustee, Linda Campbell the only voice representing Northern Ireland patients on the ‘Living With ME/CFS Working Group’, helping shape the original Plan.    The DHSC plans to lead a public awareness campaign to improve understanding of ME/CFS.  We would hope this will help build on the progress we've made already in Northern Ireland from two Health Ministers making public statements on M.E. for World M.E. Day in 2024 and 2025.    The Minister for Health NI video See here: Discussions are underway about possibly prescribing a specialist service for very severe ME via the Secretary of State - this cannot happen soon enough for Northern Ireland too!    We are grateful to the 21 MLAs who have co-signed our letter to Minister Nesbitt concerning the Delivery Plan.  Quick Summary-  Plan is a step forward, but lacks ambition and accountability  Still no strategic research plan or ME research hub  Research underfunded; bias and structural issues remain  No mandatory training for healthcare professionals  Education modules risk being outdated or ignored  Children, severe ME patients, and carers still face serious gaps  Many actions are vague or depend on future decisions  In conclusion:  We will continue pushing our CPD-certified M.E. educational resources, providing education and awareness events for medical and nursing students in QUB and Ulster University and keep pressing for improvement in all above areas and for proper implementation of NICE Guideline for ME/CFS NG206 in Northern Ireland

A huge thank you to our Long Covid representative Rebecca Logan for her powerful presentation to over 70, 2-year nursing students at Queen's University Belfast.   Rebecca (former nurse and keep-fit instructor, pre-Covid infection, now medically retired) shared her lived experience of post-Covid M.E. and highlighted the vital role nurses play in recognising and supporting patients—especially through understanding Post-Exertional Malaise (PEM).   This second event was again organised by QUB following a meeting with Hope 4 ME & Fibro NI trustees earlier this year.    The first session was attended by 200 nursing students.    Our short film ‘Discover M.E.’ was also screened during the education session and further research being undertaken by QUB PhD student Tara Anderson.   This marks another significant breakthrough in M.E. education in Northern Ireland, helping even more future healthcare professionals better understand and support those living with this often-misunderstood and neglected disease.    

Reinforcing our message today for the second Round Table meeting at Stormont! Thank you SDLP Colin Mcgrath. Great discussions on how community rehabilitation could deliver better health outcomes and reduce hospital admissions.  As members of Community Rehabilitation Alliance Northern Ireland, we attended our 4th meeting this month with political parties, for a series of roundtables to secure support for an appointment of a Community Rehabilitation Lead  Let's drive this change together.     **For people with #MyalgicEncephalomyelitis (M.E.) safe and appropriate community rehabilitation that includes education on post-exertional symptom exacerbation #PEM, pacing and energy management can be life-changing.  It offers the best possibility available, for individuals to stabilise their condition, minimise relapses and reduce the risk of deterioration.**   Linda highlighted the work our charity has undertaken by providing adequate and readily available  #ME education for ALL healthcare providers and medical and nursing students in both Northern Ireland universities….being an important educational resource as a Charity and part of the Third Sector, who could contribute to the development of a Community Rehab Lead, and the delivery of services. 

Charity encouraged by support from across political spectrum Co. Tyrone research assistant Tara Anderson was one of a number of contributors this week who took part in a special information and awareness event at Stormont to raise awareness for the chronic illness Myalgic Encephalomyelitis (M.E.).   Hope 4 ME & Fibro Northern Ireland hosted a World M.E. Day awareness event at Parliament Buildings welcoming patients, carers, healthcare professionals and elected representatives for an afternoon focused on increasing understanding of the condition.   The event at Parliament Buildings was hosted by Robbie Butler MLA and attended by Health Minister Mike Nesbitt who pledged to “do what I can” to support the continued work by professionals and organisations like Hope 4 ME & Fibro to improve M.E. healthcare services in Northern Ireland.   Health Minister Mike Nesbitt said: “I welcomed the opportunity to attend the World M.E. Day awareness event and to listen to the contributions from the various speakers. My officials recently met with Hope 4 ME & Fibro and I value ongoing engagement to improve access to services for those with M.E.”   Hope 4 ME & Fibro NI was established in 2011 by Joan McParland MBE following her own experience of becoming severely ill with Myalgic Encephalomyelitis M.E. after a viral infection. At the height of her illness, she was bedbound for just under a decade and reliant on her family for care.  Speaking after the event Joan said she was delighted to see so much support for the event. She added: “It is encouraging to see so much support from across the political spectrum in Northern Ireland.   “A recent study published by the University of Edinburgh has indicated there are estimated to be 12,500 adults and children with M.E. including post-Covid M.E in Northern Ireland.   “At our awareness event in Stormont this week we were delighted to be able to welcome contributions from Professor Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology as well as Tara Anderson who presented findings from the first Northern Ireland-based academic study into the use of virtual reality as an educational tool for healthcare professionals. Published in BMC Medical Education in 2024, the study explored how immersive learning can increase knowledge and empathy in clinical settings.”   Tara presented findings from the first Northern Ireland-based academic study exploring the use of virtual reality as an educational tool for healthcare professionals learning about M.E. Her research highlighted how immersive experiences like Discover M.E. can significantly increase both knowledge and empathy among medical students and practitioners.   Attendees and MLAs also had the opportunity to experience the award-winning short film Discover M.E. – Hidden Lives Virtually Uncovered, a six-minute animated VR production narrated by local patients and carers that provides insight into the day-to-day reality of living with M.E.   As part of the event, elected representatives had the opportunity to engage directly with patients, carers and families. A visual display housed in an ambulance at the front of Stormont focused on severe M.E. and offered a clear and accessible view of the devastating impact the condition can have on all aspects of life.   Robbie Butler MLA who hosted the invitation only event at Stormont also showed his support to the charity by raising awareness of the condition during World M.E. Day on Monday in the Chamber.   He said: “I want to talk about the ongoing, often physical, suffering of those living with Myalgic Encephalomyelitis (M.E.), this complex and debilitating neurological condition affects thousands of people across Northern Ireland.    “M.E. can leave individuals house bound or bedroom bound for years, it causes profound pain, cognitive dysfunction and hypersensitivity to light and sound.    “For over 14 years, Hope 4 M.E. & Fibro Northern Ireland has worked to fill this gap through their advocacy, education and efforts, they have kept M.E. on the public health agenda.    “I have been proud to support and work alongside the group over the years, recognising the essential advocacy they provide for a community too often overlooked.”    The event also marked the 25th anniversary of ME Research UK, a charity funding biomedical research into M.E. since 2000. Their participation underscored the importance of scientific evidence in shifting perceptions of the condition and informing future service development.   Also in attendance at the Stormont information event were MLAs Alan Chambers, Danny Donnelly, Peter McReyolds, Liz Kimmins, Jonathan Buckley, Paula Bradshaw, Peter Martin and Joanne Bunting.   Entirely volunteer-led, Hope 4 ME & Fibro has organised 17 medical conferences since their inception in 2011, bringing international researchers and clinicians to Northern Ireland to speak directly to local audiences. It also provides regular educational webinars for health professionals and students and continues to push for greater clinical recognition of both conditions.   The organisation has also contributed to research, supported awareness initiatives such as Light Up The Night and World M.E. Day campaigns, and offers ongoing peer support to a community often marginalised by mainstream services.

The charity is very grateful to Willowing Arts Tamara Laporte for awarding a scholarship to the members of Hope Crafts Group.   We were also delighted to bring the Craft Group member’s work to venues including Queen’s University Belfast and the Long Gallery in Stormont, where attendees were educated on post-exertional malaise through an outstanding visual display.  Check out their inspirational work in this lovely blog below-  “All members of the group suffer from ME, Fibromyalgia, Long Covid Induced ME or are carers for those who do. Many of the members feel isolated within society, limited in what activities they can participate in due to health limitations or caring roles. Hope Crafts facilitator Claire Kennedy is guiding members regarding supplies needed and working alongside them while they participated with the lessons. The Craft Group members have mixed abilities, interests and experience in art, many not having tried art since childhood or rekindling their love for it through groups and collaboration with others. Although daunting at first, all members exceeded their own expectations with the work they were able to produce with the Year of Light course content.  Hope Crafts Members A Year of Light Scholarship which has brought a lot of joy, creativity and connection to them all!”  

We are delighted to announce an historic first for Myalgic Encephalomyelitis education in Northern Ireland! On 14 Jan 2025, our trustees met with the Director of Nurse Education at Queen’s University Belfast.As a result, QUB has delivered its first-ever dedicated teaching session on M.E. on 30th April to over 200 student nurses— with another session scheduled for July 2025!  Our Discover M.E. film was screened, sharing powerful real-life stories from people with M.E. before the Covid pandemic. Rebecca Logan, our Post-Covid M.E. Representative, gave a moving 20-minute talk about her lived experience. Queen’s University PhD student, Tara Anderson is also participating in these sessions to further her research on the impact of the film on empathy and M.E. awareness among student nurses. See the research study published in BMC Medical Education: HERE   This is another huge step forward for M.E. education and recognition, since our collaboration for medical student education in QUB since 2018.  

Thank you to Linda Campbell and Allister Campbell who represented the charity for the third and final (for now) Community Rehabilitation Alliance N.I meeting, sponsored by Deputy Chair of the N.I. Health Committee Danny Donnelly MLA.  Linda highlighted the work our charity has undertaken towards by providing adequate and readily available  #ME education for all healthcare providers and medical and nursing students in both Northern Ireland Universities.    Reinforcing our message -   **For people with #MyalgicEncephalomyelitis (M.E.) safe and appropriate community rehabilitation that includes education on post-exertional symptom exacerbation #PEM, pacing and energy management can be life-changing. It offers the best possibility available, for individuals to stabilise their condition, minimise relapses and reduce the risk of deterioration.**   Community rehabilitation isn’t just another healthcare initiative - it’s a strategic investment in the future of Northern Ireland.  As we prepare to launch the new Community Rehabilitation Framework, the call for a dedicated Rehabilitation Lead has never been more urgent.    This role will bridge critical gaps, enhance cross-sector collaboration, and secure sustainable funding, ensuring that every community benefits from improved health outcomes, reduced hospital admissions, and better quality of life. 

As members of Community Rehabilitation Alliance Northern Ireland, today we met with political parties for a series of roundtables this June to secure support for an appointment of a Community Rehabilitation Lead     For people with MyalgicEncephalomyelitis (M.E.) safe and appropriate community rehabilitation that includes education on post-exertional symptom exacerbation PEM, pacing and energy management can be life-changing. It offers the best possibility available, for individuals to stabilise their condition, minimise relapses and reduce the risk of deterioration.   Community rehabilitation delivers tangible outcomes – improving quality of life while easing demand on overstretched services. But to fully unlock these benefits, we need visionary leadership to turn policy into practice.   Thank you Linda Campbell for representing the charity and sharing M.E. education and awareness at this important event in Stormont.    

 Volunteers’ Week 2025  This week, we honour and thank all the incredible people who give their time and energy to support our charity.   To our patient volunteers, many of whom contribute from their sickbeds, your courage and determination move us deeply.   To our healthy family member volunteers — thank you for your dedication and compassion, your support makes it all possible.     Our volunteers remind us that advocacy and hope can flourish even in the toughest of circumstances.   Whether you're working behind the scenes, raising awareness, or simply showing up with love — you are the heart of our charity.   Driven by passion and truth, together, we are building bridges to a better future. Thank you ALL. 

Due to Hope 4 ME & Fibro N.I., persistent efforts, NI DIRECT Health Conditions A-Z, has finally updated its ME/CFS health page in line with the *2021 revised NICE Guideline NG206 See HERE   Some contradictory statements remain to be addressed. As N.I. DIRECT is a public facing webpage, we have requested the following statement is removed in its entirety, due to our patient safety concerns as outlined below.    “While exercise can be helpful for some, it may worsen the symptoms of others” This line contradicts the correct information under ‘Symptoms’ on N.I. Direct and this statement is dangerous and misleading in the context of Myalgic Encephalomyelitis (ME/CFS) for several reasons: -Implies Exercise *Might Be Beneficial in M.E. This wording wrongly suggests that exercise could be a treatment for some M.E. patients. That contradicts current medical guidelines and fails to account for the core symptom of the illness: Post-Exertional Malaise (PEM)—a worsening of symptoms after even minimal physical, cognitive, or emotional effort. Downplays the Risk of Harm  It presents symptom worsening as a possibility rather than a known, common outcome. Research shows that many people with M.E., especially moderate to severe cases, experience prolonged or irreversible deterioration after exertion. This framing risks encouraging activity levels that are unsafe.   Reinforces Misconceptions: · It fuels the false narrative that M.E. is like fatigue from deconditioning, and that some patients just need to “push through.” This misunderstanding has historically led to the use of graded exercise therapy (GET)—a now-discredited and harmful approach condemned by the 2021 NICE guideline (NG206).   -Ignores Clinical Guidelines The NICE NG206 guideline explicitly rejects graded exercise therapy and states that people with M.E. should not be advised to undertake exercise programs that do not consider PEM. It promotes pacing and energy management, not exercise, as the safest way to manage symptoms.   Risks Undermining Patient Credibility By implying some might benefit from exercise, it can lead healthcare providers, families, and employers to doubt the seriousness and complexity of M.E., pressuring patients into harmful activity levels and reducing support for accommodations.     In Summary: The phrase appears moderate but masks real dangers. M.E. is not simply about fatigue—it’s about an abnormal biological response to exertion. Safe care must centre on recognising PEM, individual energy limits, and protecting patients from harm—not leaving the door open to therapies known to worsen the disease.    It is also incorrect for NI DIRECT to state M.E. causes irregular heartbeats.   27/05/2025:

Queen's University Belfast - Annual screening of UNREST for medical students since 2018 (except at height of the pandemic)    Today is another big day for M.E. awareness, hope, and education in Northern Ireland !    Our charity is proud to be screening the powerful documentary UNREST and bringing our Discover M.E. Virtual Reality Experience to 170 medical students at Queen’s University Belfast.   This is more than just a film screening — it’s about opening hearts and minds, helping future doctors understand the lived reality of M.E., and bridging the gap in medical education.   We’re also providing FREE information packs, MERUK Breakthrough magazines and gathering valuable feedback to assess the impact of our work — because education today means better care tomorrow.   This event is a symbol of hope — hope for change, for understanding, and for a better future for people with M.E.   And it’s made possible thanks to the dedication of our incredible volunteers and fundraisers. You're helping us build bridges to a better future by educating the doctors of tomorrow. Thank YOU!    

21st May 2025,  is another big day for #ME awareness, hope, and education in Northern Ireland !  Our charity is proud to be screening the powerful documentary UNREST and bringing our Discover M.E. Virtual Reality experience to 170 medical students at Queen’s University Belfast.   This is more than just a film screening — it’s about opening hearts and minds, helping future doctors understand the lived reality of M.E., and bridging the gap in medical education.   We’re also providing FREE information packs, MERUK Breakthrough magazines and gathering valuable feedback to assess the impact of our work — because education today means better care tomorrow.   This event is a symbol of hope — hope for change, for understanding, and for a better future for people with M.E.   And it’s made possible thanks to the dedication of our incredible volunteers and fundraisers. You're helping us build bridges to a better future by educating the doctors of tomorrow. Thank you!   Back to top

Mike Harley Arrives in Northern Ireland for the Moy Park, Belfast City Marathon 2025 - It’s not everyday we get to meet real heroes raising funds for biomedical research into MyalgicEncephalomyelitis - it was such an honour to welcome Mike Harley to personally say thank you!    Mike hopes to meet up with our 19 Family & Friends of James Walton who are raising the roof for M.E. awareness in Northern Ireland too!    Mike, The Marathon Man, has completed 32 marathons (EU) - Austria, Belgium, Bulgaria, Croatia, Cyprus, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden and (non-EU) - Liechtenstein, Florence (Italy), Norway, Switzerland, Serbia, Montenegro   ​£51,164 raised for Invest In ME (Target £50,000)    Read about Mike's European Marathons  Here  

Charity encouraged by support from across political spectrum Strangford MLA and Health Minister Mike Nesbitt was one of a number of politicians this week who attended a special information and awareness event at Stormont to raise awareness for the chronic illness Myalgic Encephalomyelitis M.E.   Hope 4 ME & Fibro Northern Ireland hosted a World M.E. Day awareness event at Parliament Buildings welcoming patients, carers, healthcare professionals and elected representatives for an afternoon focused on increasing understanding of the condition.   The event at Parliament Buildings was hosted by Robbie Butler MLA and attended by Health Minister Mike Nesbitt who pledged to “do what I can” to support the continued work by professionals and organisations like Hope 4 ME & Fibro to improve M.E. healthcare services in Northern Ireland.   Health Minister Mike Nesbitt said: “I welcomed the opportunity to attend the World M.E. Day awareness event and to listen to the contributions from the various speakers. My officials recently met with Hope 4 ME & Fibro and I value ongoing engagement to improve access to services for those with M.E.”   Hope 4 ME & Fibro NI was established in 2011 by Joan McParland MBE following her own experience of becoming severely ill with Myalgic Encephalomyelitis M.E. after a viral infection. At the height of her illness, she was bedbound for just under a decade and reliant on her family for care.    Speaking after the event Joan said she was delighted to see so much support for the event. She added: “It is encouraging to see so much support from across the political spectrum in Northern Ireland. “A recent study published by the University of Edinburgh has indicated there are estimated to be 12,500 adults and children with M.E. including post-Covid M.E in Northern Ireland.   “At our awareness event in Stormont this week we were delighted to be able to welcome contributions from Professor Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology as well as Tara Anderson who presented findings from the first Northern Ireland-based academic study into the use of virtual reality as an educational tool for healthcare professionals. Published in BMC Medical Education in 2024, the study explored how immersive learning can increase knowledge and empathy in clinical settings.   “Attendees and MLAs also had the opportunity to experience the award-winning short film Discover M.E. – Hidden Lives Virtually Uncovered, a six-minute animated VR production narrated by local patients and carers that provides insight into the day-to-day reality of living with M.E.”   As part of the event, elected representatives had the opportunity to engage directly with patients, carers and families. A visual display housed in an ambulance at the front of Stormont focused on severe M.E. and offered a clear and accessible view of the devastating impact the condition can have on all aspects of life.   Robbie Butler MLA who hosted the invitation only event at Stormont also showed his support to the charity by raising awareness of the condition during World M.E. Day on Monday in the Chamber.   He said: “I want to talk about the ongoing, often physical, suffering of those living with Myalgic Encephalomyelitis (M.E.), this complex and debilitating neurological condition affects thousands of people across Northern Ireland.    “M.E. can leave individuals house bound or bedroom bound for years, it causes profound pain, cognitive dysfunction and hypersensitivity to light and sound.    “For over 14 years, Hope 4 M.E. & Fibro Northern Ireland has worked to fill this gap through their advocacy, education and efforts, they have kept M.E. on the public health agenda.    “I have been proud to support and work alongside the group over the years, recognising the essential advocacy they provide for a community too often overlooked.”  The event also marked the 25th anniversary of ME Research UK, a charity funding biomedical research into M.E. since 2000. Their participation underscored the importance of scientific evidence in shifting perceptions of the condition and informing future service development.   Also in attendance at the Stormont information event were MLAs Alan Chambers, Danny Donnelly, Peter McReyolds, Liz Kimmins, Jonathan Buckley, Paula Bradshaw, Peter Martin and Joanne Bunting.   Entirely volunteer-led, Hope 4 ME & Fibro has organised 17 medical conferences since their inception in 2011, bringing international researchers and clinicians to Northern Ireland to speak directly to local audiences. It also provides regular educational webinars for health professionals and students and continues to push for greater clinical recognition of both conditions. The organisation has also contributed to research, supported awareness initiatives such as Light Up The Night and World M.E. Day campaigns, and offers ongoing peer support to a community often marginalised by mainstream services.   Back to top

Charity encouraged by support from across political spectrum Upper Bann MLA Jonathan Buckley was one of a number of politicians this week who attended a special information and awareness event at Stormont to raise awareness for the chronic illness Myalgic Encephalomyelitis M.E.   Hope 4 ME & Fibro Northern Ireland hosted a World M.E. Day awareness event at Parliament Buildings welcoming patients, carers, healthcare professionals and elected representatives for an afternoon focused on increasing understanding of the condition.   The event at Parliament Buildings was hosted by Robbie Butler MLA and attended by Health Minister Mike Nesbitt who pledged to “do what I can” to support the continued work by professionals and organisations like Hope 4 ME & Fibro to improve M.E. healthcare services in Northern Ireland.   Health Minister Mike Nesbitt said: “I welcomed the opportunity to attend the World M.E. Day awareness event and to listen to the contributions from the various speakers. My officials recently met with Hope 4 ME & Fibro and I value ongoing engagement to improve access to services for those with M.E.”   Hope 4 ME & Fibro NI was established in 2011 by Joan McParland MBE following her own experience of becoming severely ill with Myalgic Encephalomyelitis M.E. after a viral infection. At the height of her illness, she was bedbound for just under a decade and reliant on her family for care.    Speaking after the event Joan said she was delighted to see so much support for the event.   She added: “It is encouraging to see so much support from across the political spectrum in Northern Ireland.   “A recent study published by the University of Edinburgh has indicated there are estimated to be 12,500 adults and children with M.E. including post-Covid M.E in Northern Ireland.   “At our awareness event in Stormont this week we were delighted to be able to welcome contributions from Professor Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology as well as Tara Anderson who presented findings from the first Northern Ireland-based academic study into the use of virtual reality as an educational tool for healthcare professionals. Published in BMC Medical Education in 2024, the study explored how immersive learning can increase knowledge and empathy in clinical settings.   “Attendees and MLAs also had the opportunity to experience the award-winning short film Discover M.E. – Hidden Lives Virtually Uncovered, a six-minute animated VR production narrated by local patients and carers that provides insight into the day-to-day reality of living with M.E.”   As part of the event, elected representatives had the opportunity to engage directly with patients, carers and families. A visual display housed in an ambulance at the front of Stormont focused on severe M.E. and offered a clear and accessible view of the devastating impact the condition can have on all aspects of life.   Robbie Butler MLA who hosted the invitation only event at Stormont also showed his support to the charity by raising awareness of the condition during World M.E. Day on Monday in the Chamber.   He said: “I want to talk about the ongoing, often physical, suffering of those living with Myalgic Encephalomyelitis (M.E.), this complex and debilitating neurological condition affects thousands of people across Northern Ireland.    “M.E. can leave individuals house bound or bedroom bound for years, it causes profound pain, cognitive dysfunction and hypersensitivity to light and sound.    “For over 14 years, Hope 4 M.E. & Fibro Northern Ireland has worked to fill this gap through their advocacy, education and efforts, they have kept M.E. on the public health agenda.    “I have been proud to support and work alongside the group over the years, recognising the essential advocacy they provide for a community too often overlooked.”  The event also marked the 25th anniversary of ME Research UK, a charity funding biomedical research into M.E. since 2000. Their participation underscored the importance of scientific evidence in shifting perceptions of the condition and informing future service development.   Also in attendance at the Stormont information event were MLAs Alan Chambers, Danny Donnelly, Peter McReyolds, Liz Kimmins, Jonathan Buckley, Paula Bradshaw, Peter Martin and Joanne Bunting.   Entirely volunteer-led, Hope 4 ME & Fibro has organised 17 medical conferences since their inception in 2011, bringing international researchers and clinicians to Northern Ireland to speak directly to local audiences. It also provides regular educational webinars for health professionals and students and continues to push for greater clinical recognition of both conditions.   The organisation has also contributed to research, supported awareness initiatives such as Light Up The Night and World M.E. Day campaigns, and offers ongoing peer support to a community often marginalised by mainstream services.

We’re delighted to share that our charity donated another £1,000 to ME Research UK during our Recognise - Diagnose - Support ME May awareness conference in Stormont! A donation was presented to MERUK Operators Manager, Stewart Walker (2nd from the left of this photo below) during the day’s proceedings.    We are proud to play our part in advancing understanding, treatment, and hope for everyone affected by M.E.   A huge thank you to all our supporters who make donations like this possible. Together, we’re building bridges to a better future.    (As we forgot to get a photograph of the actual presentation, this cheque image has been super imposed) 

Charity encouraged by support from across political spectrum North Down MLA Alan Chambers was one of a number of politicians this week who attended a special information and awareness event at Stormont to raise awareness for the chronic illness Myalgic Encephalomyelitis M.E.   Hope 4 ME & Fibro Northern Ireland hosted a World M.E. Day awareness event at Parliament Buildings welcoming patients, carers, healthcare professionals and elected representatives for an afternoon focused on increasing understanding of the condition.   The event at Parliament Buildings was hosted by Robbie Butler MLA and attended by Health Minister Mike Nesbitt who pledged to “do what I can” to support the continued work by professionals and organisations like Hope 4 ME & Fibro to improve M.E. healthcare services in Northern Ireland.   Health Minister Mike Nesbitt said: “I welcomed the opportunity to attend the World M.E. Day awareness event and to listen to the contributions from the various speakers. My officials recently met with Hope 4 ME & Fibro and I value ongoing engagement to improve access to services for those with M.E.”   Hope 4 ME & Fibro NI was established in 2011 by Joan McParland MBE following her own experience of becoming severely ill with Myalgic Encephalomyelitis M.E. after a viral infection. At the height of her illness, she was bedbound for just under a decade and reliant on her family for care.    Speaking after the event Joan said she was delighted to see so much support for the event.   She added: “It is encouraging to see so much support from across the political spectrum in Northern Ireland. “A recent study published by the University of Edinburgh has indicated there are estimated to be 12,500 adults and children with M.E. including post-Covid M.E in Northern Ireland. “At our awareness event in Stormont this week we were delighted to be able to welcome contributions from Professor Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology as well as Tara Anderson who presented findings from the first Northern Ireland-based academic study into the use of virtual reality as an educational tool for healthcare professionals. Published in BMC Medical Education in 2024, the study explored how immersive learning can increase knowledge and empathy in clinical settings.   “Attendees and MLAs also had the opportunity to experience the award-winning short film Discover M.E. – Hidden Lives Virtually Uncovered, a six-minute animated VR production narrated by local patients and carers that provides insight into the day-to-day reality of living with M.E.”   As part of the event, elected representatives had the opportunity to engage directly with patients, carers and families. A visual display housed in an ambulance at the front of Stormont focused on severe M.E. and offered a clear and accessible view of the devastating impact the condition can have on all aspects of life.   Robbie Butler MLA who hosted the invitation only event at Stormont also showed his support to the charity by raising awareness of the condition during World M.E. Day on Monday in the Chamber.   He said: “I want to talk about the ongoing, often physical, suffering of those living with Myalgic Encephalomyelitis (M.E.), this complex and debilitating neurological condition affects thousands of people across Northern Ireland.    “M.E. can leave individuals house bound or bedroom bound for years, it causes profound pain, cognitive dysfunction and hypersensitivity to light and sound.    “For over 14 years, Hope 4 M.E. & Fibro Northern Ireland has worked to fill this gap through their advocacy, education and efforts, they have kept M.E. on the public health agenda.    “I have been proud to support and work alongside the group over the years, recognising the essential advocacy they provide for a community too often overlooked.”    The event also marked the 25th anniversary of ME Research UK, a charity funding biomedical research into M.E. since 2000. Their participation underscored the importance of scientific evidence in shifting perceptions of the condition and informing future service development. Also in attendance at the Stormont information event were MLAs Alan Chambers, Danny Donnelly, Peter McReyolds, Liz Kimmins, Jonathan Buckley, Paula Bradshaw, Peter Martin and Joanne Bunting. Entirely volunteer-led, Hope 4 ME & Fibro has organised 17 medical conferences since their inception in 2011, bringing international researchers and clinicians to Northern Ireland to speak directly to local audiences. It also provides regular educational webinars for health professionals and students and continues to push for greater clinical recognition of both conditions.   The organisation has also contributed to research, supported awareness initiatives such as Light Up The Night and World M.E. Day campaigns, and offers ongoing peer support to a community often marginalised by mainstream services.

Stormont goes blue for the second year in a row, on World M.E. Day,  the home of the Northern Ireland Legislative Assembly, Government Buildings.    In 2024 the building was lit up blue on 12th May to mark the 10th anniversary of Hope 4 ME & Fibro NI officially obtaining charity statue.    In 2025, on May 12th iconic buildings in cities in Aberdeen, Cardiff, Belfast, Edinburgh, London, Gateshead, and Perth by turning iconic structures blue in honour of those affected by ME. Northern Ireland's Parliament Buildings at Stormont was lit at the behest of ME Research UK to mark their 25th Anniversary.      ME Research UK Attends Hope 4 ME & Fibro NI Stormont Meeting 2025  Read full report Here Back to top    

Article from ME Research U.K.  16/05/2025   " I rise to mark the beginning of ME Awareness Week and highlight the ongoing, often invisible, suffering of those living with myalgic encephalomyelitis. That complex and debilitating neurological condition affects thousands across Northern Ireland but remains chronically under-recognised and, in some cases, underserved in our health system. ME can leave individuals housebound or bedroom-bound for years. It causes profound fatigue, pain, cognitive dysfunction and hypersensitivity to light and sound. Sadly, many patients still face disbelief, stigma and a lack of appropriate care. Despite its severity, there are no specialist services for ME patients in Northern Ireland.   There will be an event tomorrow in room 115 that Members are more than welcome to drop into. For over 14 years, Hope 4 ME & Fibro NI has worked to fill the gap. Through its advocacy, education and efforts, it has kept ME on the public health agenda. I have been proud to support and work alongside the group over the years, recognising the essential advocacy that it provides for a community that is too often overlooked.   So spoke Robbie Butler MLA (deputy leader of the Ulster Unionist Party) to the Northern Ireland Assembly to mark International ME Awareness Day on 12th May 2025. The next day he opened a highly successful meeting at the Parliament Buildings organised by Hope4ME & Fibromyalgia NI – a charity run by patients and family volunteers for people with ME, Fibromyalgia, and Covid-induced ME. The meeting was attended by MLAs, political representatives, healthcare workers, academics, & educators and the audience heard the Minister of Health Mike Nisbett MLA pledge his determination to help those affected by M.E. Northern Ireland presently having no specialist services for ME/CFS and the degree of implementation of the Delivery Plan for ME/CFS is still unclear.   Hope4ME & Fibro NI’s Founder Joan McParland MBE set the tone of the meeting with her speach ‘Recognise, Diagnose and Support M.E.‘ and on the Northern Ireland ME situation and the urgent need for action. Robbie Butler MLA Mike Nesbitt MLA Minister of Health Linda Campbell, Chair; Prof. Tom Trinick, Medical Advisor; Joan McParland MBE, Founder, and Dr Tara Anderson Information ambulance on Apron Operations Director with slide showing ME Research UK’s project spread Hope 4 ME & Fibro NI’s Medical Advisor, Prof. Tom Trinick OBE, who recently retired from the NHS, and is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology, thereafter provided details of the most common symptoms of ME/CFS concentrationg on fatigue and post-exertional malaisebefore a short Q&A session. The audience then learned about research by Dr Tara Anderson of Queen’s University Belfast who presented findings from the first Northern Ireland-based academic study – into the use of virtual reality as an educational tool for healthcare professionals. The paper, published in 2024 being entitled, “Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study” and was the perfect way to introduce and explain the VR headsets available at the close of the meeting.   The event also recognised the need for research into the disease and marked 25 years since the foundation of ME Research UK. The charity was represented by its Operations Director who presented a short closing speech after which attendees were invited to descent to Stormont’s apron to view a (not on active service) ambulance whose interior had been adorned with information on the disease, its effects, and the need for specialist care and recognition in Northern Ireland. On view was ‘Simon’ a mannequin on a gurney annotated to highlight the physical symptoms of the biological disease which is M.E.   There was also the opportunity, taken by many including MLA’s Alan Chambers (Member of the Northern Ireland Health committee and Health Spokesperson for Ulster Unionist Party) and Danny Donnelly(Alliance Party and Deputy Chairperson of the Northern Ireland Health Committee), to don a VR headset and enter a virtual reality experience which introduces M.E. and addressed the stigma and misinformation surrounding the disease honed from personal experiences. The headsets are used to increased awareness and education of M.E. which then becomes a learning and discussion point to share with others and is an extension of the Discover M.E.film initiative.   ME Research UK thanks Hope 4 ME & Fibro NI for teh opportunity to participate and congratulates the group on an excellent meeting.   16/05/2025

Robbie Butler MLA, Members' Statement - Recognition in the Assembly on 12th May, World ME Awareness Day 2025 Robbie delivered a Members’ Statement in the Northern Ireland Assembly that shone a spotlight on the work of Hope 4 ME & Fibro Northern Ireland and the urgent need for proper ME services. Mr. Butler praised the charity for: Raising awareness of the illness and its life-changing impact. Campaigning for specialist ME services in Northern Ireland, where none currently exist. Bringing world-leading clinicians and researchers to our conferences to educate healthcare professionals. Supporting families and patients, ensuring they are not left behind. He reminded colleagues that over 7,000 people in Northern Ireland live with ME, including children and young people, and called for urgent attention to address the ongoing lack of care and support. This recognition comes after 14 years of our campaigning, during which we have: Hosted 16 major conferences. Invested funds in biomedical research. Continued to give patients hope by keeping ME firmly on the political agenda. We are very grateful to Robbie Butler MLA for his support over many years and for using his voice to speak up for people with M.E. and Fibromyalgia, and for recognising the dedication of our members and supporters. 📺 You can watch his full statement here.  

New 2025 ME Factsheet Out Now for World M.E. Day!    Looking for a clear, reliable introduction to Myalgic Encephalomyelitis (ME)? Our updated 2025 factsheet is now available — and it's packed with essential facts.    Learn what ME is, how it affects millions worldwide, and what needs to change. Whether you’re a healthcare worker, policymaker, family member or someone new to ME, this resource is for all.   Download, print, and share: Here    

  We’re excited to launch our brand-new A5 flyers, now being distributed across Northern Ireland! Each flyer includes two quick-scan QR codes to make learning about M.E. simple, fast and evidence-based for busy healthcare professionals. The codes lead to -   1/ Discover M.E.  - A powerful 6-minute film offering a compelling overview of the lived experience of Myalgic Encephalomyelitis, through the voices of real Northern Ireland patients.  2/ World ME Alliance - Six Myths & Facts Everyone Should Know About MyalgicEncephalomyelitis (ME) The following information is taken from World M.E. Alliance website.  6 Myths vs Facts – A must-read from World ME Alliance busting the most common misconceptions about M.E. with clear, science-backed facts.   Whether you're a GP, medical student, nurse, physio or policymaker, these resources are designed to fit into your schedule while transforming your understanding of this often-misunderstood condition. Look out for our flyers in clinics, universities and at events – or contact us if you'd like a batch for your workplace   Myth 1: When ME is misclassified as a mental illness, it distorts the entire ecosystem of healthcare, research, and social support—leading to misdiagnosis, harmful treatments, lack of services, and stalled scientific progress. Share this to help correct one of the most harmful misconceptions about ME.   Myth: ME is a mental health condition. Fact: ME is a biological illness that disrupts the metabolism and impairs the brain, immune system and autonomic nervous system. It often starts after an infection, common flu or COVID. Millions of people worldwide have ME, with about 75% of them being women. Many struggle with daily activities, up to 75% cannot work or attend school, and at least 25% of patients are so severely affected that they are housebound or bedridden. —————-   Myth 2: If people truly understood that ME is not “just tiredness,” we’d stop telling patients to push through—and start protecting them from getting worse. Share this and help others understand what ME is really about.   Myth: ME is just about feeling tired. Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion. This can trigger a “crash” lasting for days or longer, making even basic activities difficult or impossible. Attempting to push through can significantly worsen symptoms and may lead to long-term deterioration. For those with severe ME, even minimal exertion—such as sitting up, light conversation, or sensory stimuli like sound and light—can be intolerable, leaving them extremely disabled and dependent on full-time care.   ————— Myth 3: When doctors and loved ones believe exercise will help, people with ME end up pushing themselves into long-term harm. That belief has cost lives. Share this to help protect people with ME from harmful advice. Myth: You can exercise your way to recovery from ME. Fact: Exercise can be dangerous for people with ME. Unlike other chronic conditions where exercise can help, structured exercise programs often make ME symptoms worse as patients end up pushing themselves too far. In the past, graded exercise therapy (GET) was recommended, but after reviewing the evidence, health organisations like NICE in the UK and the CDC in the US have warned against it. Instead, people with ME are encouraged to pace themselves—balancing activity and rest—to avoid deterioration.   ——————   Myth 4: Assuming ME only affects certain people leaves too many undiagnosed, unsupported, and suffering in silence—especially in marginalized communities.  Share this to help make ME visible for everyone it affects.   Myth: Only certain groups of people can develop ME.  Fact: ME affects people of all races, genders, ages, and socioeconomic backgrounds. The misconception that ME primarily affects certain groups stems from disparities in diagnosis and healthcare access. While about 75% of those affected are women, ME can affect anyone, regardless of age, gender, race or income. In addition, marginalized communities face more challenges getting diagnosed and treated due to bias in the medical system and lack of awareness.   —————— Myth 5: Recognizing the overlap between ME and Long COVID could accelerate research, improve care, and build bridges between patients who’ve been dismissed for decades and those newly affected.  Share this to support unified research and treatment efforts.   Myth: Long COVID is entirely different from ME. Fact: Many Long COVID patients have symptoms that match ME. Since the COVID-19 pandemic, researchers have found that a large number of people with persistent Long COVID meet the diagnostic criteria for ME. Many experience Post-Exertional Malaise (PEM) - an extreme worsening of symptoms after even minor physical or mental exertion which is the core symptom of ME. Studies highlight the biological similarities between the two diseases, reinforcing the need for integrated research and clinical approaches for these two conditions as well as other post-infectious syndromes.   —————— Myth 6: Believing there’s “nothing doctors can do” leads to patient neglect - but there are ways to ease suffering and improve lives. Share this to remind the world that ME patients deserve proper care.   Myth: Doctors cannot help people with ME. Fact:  Doctors can help people manage ME symptoms. While there is no cure for ME, there are compassionate ways to help patients manage their symptoms, in addition to pacing to prevent PEM. Treating co-existing conditions and providing medications to address sleep disturbances, pain, and cardiac and neurological issues can offer significant relief. Offering at-home visits, online consultations and palliative care can make a big difference to someone suffering from Severe ME.   ————————————————————————————————— For more information on treatments, check out these trusted resources: U.S. ME/CFS Clinician Coalition Guidelines:  https://mecfscliniciancoalition.org/  UK NHS Guideline: https://www.nice.org.uk/guidance/ng206 Patient-Reported Treatment Outcomes in ME/CFS and Long COVID: Eckey, M., Li, P., Morrison, B., Davis, R. W., & Xiao, W. (2024). medRxiv, 2024-11. Link Manual of Medicine. (n.d.). Essential drugs and therapies for ME/CFS, Long Covid, and Fibromyalgia symptoms relief. Retrieved March 5, 2025, from https://manualofmedicine.com/me-cfs-fm-long-covid/essential-drugs-therapies-me-cfs-long-covid-fibromyalgia-symptoms-relief/ Grach, S. L., Seltzer, J., Chon, T. Y., & Ganesh, R. (2023, October). Diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome. In Mayo Clinic Proceedings (Vol. 98, No. 10, pp. 1544-1551). Elsevier. Link. Key References: Bateman, L., Bested, A. C., Bonilla, H. F., et al. (2021). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings,  Centers for Disease Control and Prevention. (2024). ME/CFS Basics. Retrieved from cdc.gov. Clayton, E. W. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An IOM Report Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: Major Findings, Mechanisms, and Recommendations. Nature Reviews Microbiology. National Institute for Health and Care Excellence. (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NICE Guideline NG206). Retrieved from nice.org.uk.  

Almost two-thirds more people are living with ME/CFS in England than previously thought, a study says. This would equate to approximately 12,500 people in Northern Ireland    The new estimate suggests that approximately 404,000 people are affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a 62 per cent rise from the previously accepted figure of 250,000.    Researchers also found that people of Chinese, Asian/Asian British, and black/black British ethnicities are substantially less likely to be diagnosed with ME/CFS than white British people.    Experts say the findings highlight that receiving a ME/CFS diagnosis is a “lottery” depending on ethnicity and location.     Improved training of medical professionals and research into identifying accurate diagnostic tests for the long-term debilitating illness should be prioritised as a result, they add.     Large dataset ME/CFS’ key feature, called post-exertional malaise, is a delayed dramatic worsening of symptoms following minor physical effort. Other symptoms include pain, brain fog and extreme energy limitation that does not improve with rest. Causes are unknown and there is currently no diagnostic test or cure.     Researchers from the University of Edinburgh used NHS data from more than 62 million people in England to identify those diagnosed with ME/CFS or post-viral fatigue syndrome.     They examined the data by gender, age, and ethnicity, and grouped it by different areas of England.    Revised estimate The study found that lifetime prevalence of ME/CFS for the population of women and men in England may be as high as 0.92 per cent and 0.25 per cent, respectively, or approximately 404,000 people overall.     The previous estimate of 250,000 came from the UK Biobank population which contains disproportionately more people who are in better health.    Prevalence of ME/CFS varied widely across England, with Cornwall and the Isles of Scilly having the highest rates, while North West and North East London reported the lowest.     The condition peaked around the age of 50 for women and a decade later for men, with women six times more likely to have it than men in middle age.     Ethnic disparity Researchers also found that ME/CFS prevalence varies greatly by ethnicity. White people are almost five times more likely to be diagnosed than those from other ethnic groups.    This pattern is consistent across all regions and for both women and men. People of Chinese, Asian/Asian British, and black/black British backgrounds are significantly less likely to be diagnosed with ME/CFS, with rates 90 to 65 per cent lower than white people. The difference is more pronounced than for other conditions like dementia or depression, experts say.    The study is published in medical journal BMC Public Health. It was funded by the National Institute for Health and Care Research, the Medical Research Council and the charity ME Research UK."   Read the full paper in BMC Public Health  https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22603-9

A sneak preview of our new front design for ‘Demystifying M.E.’ information packs, the M.E. educational, second part of the Discover ME Experience.   Thanks to the fundraising efforts of our members and supporters, we offer fully CPD-certified training/information packs.   FREE to healthcare providers and medical students in Northern Ireland. Contact us.  (Available at charity events or by direct request to the charity only) 2023

1st April Monthly Meeting 2025 - Ashley Montgomery, Advanced Practitioner Physiotherapist Pain Clinic, Ulster Hospital Belfast.   Topic: Is Compassion Selfish or Self-Care? 💙 Join us for an insightful session with Ashley Montgomery, Advanced Practitioner Physiotherapist Pain Clinic Ulster Hospital on exploring the balance between compassion, self-care, and wellbeing.   Learn how prioritizing self-care isn’t selfish but essential—for your health, your recovery, and those around you. 🔹 Understand the science behind self-compassion 🔹 Discover practical strategies for self-care 🔹 Explore how caring for yourself enhances  ========================= Date Tuesday 1st April 2025 Time: 6:45-8pm Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm ========================= Zoom link is in our members only group ========================= Recording We will be recording the meeting for the members only page on Facebook. Please let us know before the end of the meeting if you don't want wish to be in the recording and we will edit the video =========================

M.E. Awareness Month can feel like an echo chamber if we only speak within patient and advocacy circles. The biggest impact comes from breaking through to healthcare providers, medical students, and policymakers who influence care and research funding. ❓How is Hope 4 ME & Fibro N.I. breaking through this echo chamber - ✅ Direct Outreach to Medical Schools providing free, CPD certified materials. ✅ Engaging Healthcare Providers – Providing clear, research-backed resources tailored to doctors and medical professionals. ✅ Hosting Expert-Led Webinars for Healthcare Professionals – offering free, accredited talks.  ✅ Collaborating with Medical Organizations and/or co-producing M.E.  education events and resources alongside -GPNI -Public Health Agency -Research Institutions  -Department of Health -HSC Clinical Education Centre -Queen’s University Belfast & Ulster University -HSCNI Strategic Planning & Performance Group  

21st March 2025 - Outreach M.E. & Fibromyalgia Session at Creggan Enterprises’ Rath Mor, Focus Project Coordinator, thank you to Amie Gallagher, for inviting the charity to provide an awareness and information session on Friday 21st March 2024 and for their kind donation.  Thank you also to our Chair Linda Campbell ANP who delivered an informative slide presentation and facilitated a Q&A opportunity for attendees.    The Ráth Mór Complex, Bligh’s Lane, L/Derry. The project is funded by Joseph Rowntree Charitable Trust and seeks to provide local women with practical support and a platform for their voice and issues to be heard within the wider community.

Two Lives – One Story is a deeply personal video that reflects the reality of those living with Myalgic Encephalomyelitis and the strikingly similar symptoms within one subset of Long Covid patients. It is an honest portrayal of loss, resilience, and the long struggle for recognition.      The parallels between past and present patients highlights the urgent need for awareness, research, and education, and exposes a persistent issue: the medical community’s longstanding neglect of M.E.    The video starkly reveals the consequences of this oversight.   The two patients featured live 40 miles apart which made recording together incredibly difficult—the project took 5 months, to eventually, navigate the many challenges they faced in the hurdles of meeting up for an hour and after weeks of scripting their message online.  Patients form deep friendships through unique shared struggles with M.E. and Long Covid, stigma, and disbelief. Facing skepticism and isolation, they find solace in each other—offering support, understanding, and validation in a way no one else can.    We know this may be difficult to watch. However, we hope our shared journey encourages healthcare providers and decision-makers to reflect on the added burden of stigma and disbelief.    Greater understanding will eventually lead to better care, compassionate policies, and much-needed research.   Thank you for watching, for listening, and for being part of this journey toward a better future. Rebecca & Joan 💙  

March monthly meeting Topic: Advances in the understanding of pain management. M.E. - Fibromyalgia - Long Covid Speaker: Dr. Aaron Cole. Discipline of Physiotherapy. University College Cork   Dr. Aaron Cole graduated with a BSc (Honours) in Physiotherapy from the University of the University of Hertfordshire in 2015. He started as a Practice Tutor in UCC MSc (pre-registration) Physiotherapy course in January 2020 and is the module co-ordinator for the module Cardiovascular Health and Health Promotion within this module, Dr. Joe McVeigh and he cover the teaching on the condition of Long-COVID. We teach our students on the impact of this condition, the symptoms experienced and how we as Physiotherapists can support patients living with Long-Covid supported by the updating evidence base.    Aaron has planned to register for a research PHD focusing on the the use of VR in prompting pacing and self management. ========================= Date Tuesday 11th March 2025 Time: 6:45-8pm Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm ========================= Zoom link is in our members only group ========================= Recording We will be recording the meeting for the members only page on Facebook. Please let us know before the end of the meeting if you don't want wish to be in the recording and we will edit the video =========================

Major Announcement GPNI M.E. Clinical Update Available to All GP Surgeries in Northern Ireland    The charity is very grateful to GPNI for agreeing to host this major breakthrough on #ME education for full potential of 327 GP Practice, primary care teams in Northern Ireland.    This clinical update, webinar taking place on Thursday 6th March 2025 will cover assessment, diagnosis, support and treatment of #MyalgicEncephalomyelitis and #LongCovid (i.e.Covid-induced ME)      These webinars are recorded and will remain available to any primary care professionals who are unable to attend the live session on Thursday 6th March 2025, 1pm to 2pm.    The speaker panel includes Dr. Nina Muirhead, Dr. Robin Kerr, our Chair Linda Campbell.  Thank you to Action for ME for so readily agreeing to help us coordinate  ‘Learn about M.E.’ specifically for GP Surgeries in N.I.  The Learn About M.E. project is a collaborative with input from the ME Association, ME Action Scotland and the 25% ME Group.  ————————————————————————————- The ‘Learn about M.E.’ project was funded by the Scottish Government through the Neurological Care and Support: Framework for Action 2020 to 2025, under the Staff capacity building heading. The framework aims to ensure people can access personalised care and support, regardless of their condition or where in Scotland they live. The aim of the project, which ran from October 2020 to September 2023, was to increase knowledge and confidence in healthcare professionals in Scotland on the diagnosis and management of Myalgic Encephalomyelitis (M.E.)/Chronic Fatigue Syndrome (CFS). ————————————————————————————— What is GPNI -  “ Northern Ireland has 327 GP Practices. The emergence of COVID-19 saw a seismic change in General Practice with significant clinical, operational & educational challenges, and information from multiple sources was emerging at an overwhelming pace.   It was evident that a centralised information platform for GP Primary Care was needed. With support and funding from the Eastern Federation Support Unit (FSU), from concept to website launch in April 2020, took just three weeks.  A live web-based educational programme started soon after and has acted as a catalyst for enhanced primary and secondary care understanding & communication. “

Who We Are & What We Do -  Hope 4 ME & Fibro NI is an all-volunteer led charity run by patients, family members, supported by medical and scientific experts: for people with Myalgic Encephalomyelitis (M.E.), Fibromyalgia and Covid-induced M.E.. It is reliant solely on donations and small grants when available. Our mission is to reach out and support, advocate for, inform and empower people with Myalgic Encephalomyelitis, Fibromyalgia and Covid-induced M.E.. We achieve this through the means of information, communication, educational improvements, research, partnership working, lobbying and campaigning for services. We raise awareness by engaging with, informing and educating a wide range of audiences. This include patients and family members, the general public, our local, national and international allies, healthcare professionals and academic institutions. We work collaboratively with Queens University Belfast and Ulster University, to better educate their healthcare professional students. We have been lobbying and campaigning for the establishment of specialist M.E. services in Northern Ireland for 14 years. With the support of local MLAs, we have held regular meetings with representatives and commissioners from the Department of Health NI. Whilst we as a charity do not commission or provide health services for people with M.E., Fibromyalgia, Long Covid, or Covid-induced M.E. in Northern Ireland, we continue to campaign for such services on behalf of the People of NI. We continue to support, and have been involved in local, national and global research projects, into M.E., Fibromyalgia and Long Covid. We have also carried our own patient surveys: 2021 ‘M.E. Support Clinic Within General Practices’ and 2023 'Future M.E. Services in Northern Ireland'. Our website and social media platforms, additionally offer a means of reaching out,  supporting and empowering our more rural or house and bed-bound patients, thus giving them a voice. This provides people with the opportunity of connecting and engaging with, those who understand the reality and isolation of living with these conditions, on a day-to-day basis. Core publications underpinning our strategic priorities for 2025–26: ·      The NICE guideline [NG206] Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Published: 29 October 2021. This guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. Who is it for?  Health and social care professionals, including those working or providing input into educational and occupational health services Commissioners People with suspected or diagnosed ME/CFS, their families and carers and the public https://www.nice.org.uk/guidance/ng206 The NICE guideline [NG193] Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain. Published: 07 April 2021. “This guideline covers all types of chronic pain (pain that persists or recurs for more than 3 months). It includes chronic primary pain (in which no underlying condition adequately accounts for the pain or its impact) and chronic secondary pain (in which an underlying condition adequately accounts for the pain or its impact). Chronic primary pain and chronic secondary pain can coexist.” https://www.nice.org.uk/guidance/ng193 Fibromyalgia (chronic widespread pain) is a type of chronic primary pain. World Health Organisation, International Classification of Diseases - ICD 11   MG30.01 Chronic widespread pain. Fibromyalgia was re-categorised as a “Chronic widespread pain” disorder in 2019 “Chronic widespread pain (CWP) is diffuse pain in at least 4 of 5 body regions and is associated with significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles). CWP is multifactorial: biological, psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate when the pain is not directly attributable to a nociceptive process in these regions and there are features consistent with nociplastic pain and identified psychological and social contributors.” https://icd.who.int/browse/2024-01/mms/en#849253504     The Interim Delivery Plan on ME/CFS – Consultation Outcome Dec’ 2024 “Sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision” Final plan to be published March 2025. Currently covers the population of England. Northern Ireland Executive to evaluate the views of their residents, to consider the implications for local policy.  https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan/my-full-reality-the-interim-delivery-plan-on-mecfs 3 key themes: research, attitudes and education, and living with ME/CFS. In relation to ‘attitudes and education’ - focus on education and training: NHS England developing an ME/CFS e-learning module - available to all professional groups and the public. Medical Schools Council will - promote shared learning plus NHS England ME/CFS e-learning package to all UK medical schools, and encourage direct patient experience of ME/CFS, to undergraduates. Royal College of Physicians - will ensure that its training on ME/CFS keeps pace with research and the latest guidance. Of Important Note – Hope 4 ME & Fibro NI, currently have an e-learning, CPD certified course: ‘Discover M.E. - Demystifying Myalgic Encephalomyelitis’. Broader actions of ‘Interim Delivery Plan on ME/CFS’ include: ensuring widely available information on ME/CFS is kept up to date, for example the NHS England public webpage. The Department for Education (DfE) has also agreed to take action to share training on ME/CFS and update guidance. Responses to Regulation 28 Report ‘to Prevent Future Deaths’ following Coroner’s Inquest into the Death of Maeve Boothby-O’Neill NHS England doing a stocktake of all existing and previously known as: ‘CFS/ME services’, as a first step. The establishment of a working group to determine if commissioners of the now known as: ‘ME/CFS services’, require additional support. NICE to review the evidence on dietary management and strategies such as tube feeding for patients with severe M.E., and amend the guidelines accordingly. Medical schools are being encouraged to provide undergraduates with direct patient experience of M.E., and an NHS e-learning package about the condition to be promoted to all of them.   Economic Case There are strong economic reasons to address ME/CFS. The total cost to the UK economy of ME/CFS in 2014/15 was approximately £3.3 billion in a weighted analysis, assuming a prevalence of ME/CFS of 0.4% of the population. (20/20 Health ‘Counting the cost’ report) *This estimate is now 10 years out of date, with the economic burden to the UK  now considerably higher, and rising. Statistics March 2021 Census – 1.9 million population NI. Pre-pandemic number of people in NI estimated to have M.E. = 7,500 Long Covid A new group of chronically ill people has emerged post covid infection, who have developed a not yet fully understood illness: Long Covid. Various symptoms that have either resulted from organ damage caused by the initial Covid-19 infection, or chronic symptoms that closely mimic those seen in ME/CFS (Covid-induced M.E.), are apparent. A similar story is unfolding of patients experiencing: disbelief and a lack of knowledge amongst healthcare professionals, a lack of specialist healthcare services, use of inappropriate, harmful treatments, and psychologising of their physical illness. Globally – 65 million people are estimated to have Long Covid. March 2023 ONS estimated 1.9 million people with Long COVID in the UK (2.9% of the population). Applying this to the 1.903 million population of NI: 2.9% of 1.903 million = 55,187 55,187 people are estimated to have Long Covid in NI. It is estimated that 50% of Long COVID patients have Covid-induced M.E. Applying this to the number of people in NI estimated to have Long Covid: 50% of 55,187 = 27,59x 27,593 people estimated to have ‘Covid-induced’ M.E. in NI. Add this 27,593 to 7,500 (number of people with M.E. pre-pandemic) = 35,093 Post-pandemic number of people in NI now estimated to have M.E. = 35,093   Raising Awareness of M.E. and Long Covid To achieve this, we at Hope 4 ME & Fibro NI, will target audiences through various social, press and broadcast media, as well our online activity and direct campaigns. Priority given to raising awareness of: The changes in the recommendations of the 2021 NICE guideline especially around the removal of the recommendation for Graded Exercise Therapy.  A widespread understanding of the dangers of exercise is urgently needed The immediate need to re-establish previous ring-fenced funding for health services for people with M.E.. Also, to establish that this funding will be recurrent,and adequately include funding for health services for people with Long Covid and Covid-induced M.E.. Key audiences to Target to Raise Awareness   1.    Northern Ireland Executive (devolved Government in NI) – specifically the Health Minister, the Department Health NI, the Strategic Planning and Performance Group (SPPG), and the Public Health Agency (PHA).   2.    Members of Legislative Assembly (MLAs).   3.    The Northern Ireland Assembly Committee for Health.   4.    The Royal Colleges and Professional Bodies of Healthcare Professionals in NI.   5.    Medical and other healthcare professionals.   6.    Hope 4 ME & Fibro NI supporters and people with M.E. who engage with us      through social media.   7.    The wider public who may benefit from information about M.E. and post infectious illnesses which cause PEM.   Campaigning for Effective Support Campaigning influences politicians and healthcare professionals to convey the urgency of addressing healthcare inequalities and effectively supporting - adults, children and young people with M.E. and Long Covid. We have identified a number of key areas, reflected by our members, that they wanted support for, and we feel we can make the greatest impact. We will continue to campaign on other relevant issues as they develop.   Implementation of the NICE Guideline on M.E. The 2021 NICE Guideline on ME/CFS was a huge milestone for people with M.E., as the standard of care that people with M.E. should receive, was significantly enhanced. The Guideline outlined crucial recommendations relating to diagnosis, management, and specific care for those with severe M.E., and children and young people. In addition, it clearly stated that people with M.E. should not be offered graded exercise therapy (GET) or any exercise that involves fixed incremental increases in activity. However, progress has been extremely slow since its publication, In Northern Ireland, the Department of Health (DoH) review guidelines produced by NICE and decide whether it is relevant to Northern Ireland. When guidance is not relevant the DoH advises on any changes which need to be made, majority of NICE guidance, are however approved by the DoH.  https://rnid.org.uk/information-and-support/support-for-health-and-social-care-professionals/about-national-institute-for-health-and-care-excellence-nice/ On 19th January 2022, the Department of Health NI, reviewed the above NICE guidance on ME/CFS, and formally endorsed it as applicable in Northern Ireland. https://www.health-ni.gov.uk/sites/default/files/publications/health/doh-sqsd-ng-206.pdf A range of actions were identified to be taken by the following groups:   1.    HSC Board (now SPPG) / PHA 2.    HSC Trusts 3.    RQIA 4.    HSC Special Agencies and NDPBs.   However: commissioned services changes to the care provided by family practitioners (GPs) new improved care provision from HSC Trusts and Integrated Care awareness within the Independent sector establishment of ongoing formal training initiatives   These recommendations have not been implemented so far, and positive assurances have not been provided by the various groups tasked with actioning the guideline within the set time-frames of 3-9 months. This leaves people in NI with M.E., still waiting to see any real change on the ground. Education of Doctors and Other Healthcare Professionals The new NICE Guideline states: “Health and social care providers should ensure that all staff delivering care to people with ME/CFS receive training relevant to their role so they can provide care in line with this guideline. Training should include: ·       helping them to understand what ME/CFS is and its diagnosis and management ·       the experiences of people with ME/CFS.” https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#information-and-support   Hope 4 ME & Fibro NI, will work to support this through the following: ·      Seeking out opportunities to engage with other healthcare professional (HCP) schools within local universities. - building on our work from 2017 with the school of medicine at Queens University Belfast (QUB), then from 2022 with Ulster University. ·      Encouraging doctors and other HCPs to take existing and new, CPD training in M.E. and Long Covid, through accredited on-line training programmes.       Following our successful drive (supported by SPPG) we have secured a General Practice NI ME/CFS Webinar session, scheduled for 6th March 2025. This will be delivered by Dr Nina Muirhead and Dr Robin Kerr, from the ‘Learn About M.E.’ collaboration project, funded by the Scottish Government. We will continue to campaign for the further development of HCP under and post-graduate education.   ·      Building upon our relationship with the HSC Clinical Education Centre, who  previously hosted our successful 5 M.E. Webinars produced in 2021. We will seek to work in partnership with HSC CEC and the PHA Nurse Consultants, to create an educational resource on severe M.E. for Community Nurses.    ·      Working with the Dept of Health NI, SPPG, and NI Direct on their collaborative, online, A-Z Health Conditions Symptom checker, we will continue to negotiate on essential changes required as to how ME/CFS is referenced and explained, in line with its intended purpose:   "A-Z Health Conditions Symptom Checker was designed to provide a Northern Ireland based, reliable and trusted source of information for patients to identify what they had, know what to do, how to self-manage, if appropriate, and how to access healthcare.” HSC Consultant Medical Advisor -  https://fb.watch/xc0U03iKz2/?   ·      As part of the implementation of the NICE guideline in Northern Ireland, we will ask for ring-fenced funding for education and training programmes for GPs, and other medical, nursing and allied healthcare professionals. In addition, we will ask that the SPPG and PHA issue health trusts with clear directions on the need to implement this education and training as a priority, paying particular regard to the harms of Graded Exercise Therapy (GET).  

Stormont World M.E.Day 2025 - Information Session & MLA/Patient Engagement   Hosted by Robbie Butler MLA - Opening Address by Minister of Health for Northern Ireland Mike Nesbitt    Join us at Parliament Buildings on Tue May 13, from 2.00pm - 3.00pm for our World M.E. Day Awareness and Information event happening in Room 115!   Hear from our eminent, Northern Ireland based, Medical Advisor on the urgency to Recognise - Diagnose - Support ME   Connect with ME Research UK charity, coming to Stormont to mark their 25th anniversary of funding biomedical research, globally!   Learn about the first ever Northern Ireland-based research study on M.E., with results published in BMC Medical Education.   Unique opportunity to immerse in our virtual reality M.E. education tool to learn of the real-lived experience of N.I. patients, in just 6.40 minutes. Additionally, from 3.00pm we will have an MLA/Patient Engagement session and severe M.E. visual display in the Apron Area. Don't miss this unique opportunity to be part of the change for adaquate and reformed patient.   Robbie Butler MLA has been a consistent supporter of Hope 4 ME & Fibro NI, actively participating in meetings with health commissioners, awareness events and advocating for individuals affected by Myalgic Encephalomyelitis (M.E.) and Fibromyalgia.​ Robbie’s role in hosting his third event in Stormont and other events in his constituency area, underscores his commitment to facilitating dialogue between stakeholders, and advocating for systemic improvements in healthcare services.​   ‘Lighting the Way for M.E.: A Vision of Hope and Change in 2025’.  Joan McParland MBE In 1999, Joan's life took a dramatic turn when a sudden viral infection left her severely incapacitated with M.E., rendering her bed-bound and totally reliant on her family for nearly a decade. This personal battle with a misunderstood and often stigmatised illness inspired her to take action.​ In 2011, she founded Hope 4 ME & Fibromyalgia NI, an all-volunteer, patient-led charity officially registered in 2014. The organisation offers vital support through monthly Zoom meetings, annual conferences featuring international experts, and advocacy efforts aimed at improving healthcare services for patients across Northern Ireland. Under her leadership, the charity was granted the Queen’s Award for Voluntary Services, the highest accolade for volunteer groups in the UK. ​   14:15 - 14:25 Virtual Reality Education on M.E. for Medical Students/Health Professionals Tara Anderson introduces the *first ever Northern Ireland research on M.E. “Virtual reality education on myalgic encephalomyelitis for medical students and healthcare professionals: a pilot study.” Published in BMC Medical Education in September 2024. Learn how immersive virtual reality (VR) educational experiences within healthcare education can increase knowledge and empathy of M.E.   14:25 - 14:45 Fatigue, Long Covid and Myalgic Encephalomyelitis (M.E.) Professor Tom Trinick will present on the urgency to recognise, diagnose and support M.E! Recently retired from the NHS, Professor Trinick is triple accredited in General Medicine, Endocrinology and Diabetes, and Chemical Pathology. Clinical Director for Laboratory Medicine, on the Consultant on-call rota for over 30 years, and running clinics in General Medicine, Lipid Management and Testosterone Deficiency, Prof. Trinick has also sat on many Department of Health and Area Board Committees.     14:45 - 15:45 An Opportunity to Experience Virtual Reality, DISCOVER M.E. (6-minutes) Attendees will have an opportunity to immerse in the virtual reality ‘Discover M.E. - Hidden Lives Virtually Uncovered.’ An award winning, animated short film, narrated by six Northern Ireland patients and carers on the real- lived experience with Myalgic Encephomyelitis.   14:45 - 17:00 Drop in - MLA/Patient Engagement The Apron Area is the space at the bottom of the steps of the front of Stormont Building, home of the Northern Ireland Legislative Assembly. All 90 of our elected representatives will receive an official invitation to view our severe M.E. visual display and meet with patients, carers and family members. Don’t miss this opportunity to engage directly with MLAs on the need for specialist M.E. services in Northern Ireland  

Thank you to Ability NI magazine for raising awareness for M.E. with a 2-page feature in the run up to World M.E. Day 2025!  Read the feature here.  Myalgic Encephalomyelitis (M.E.), previously known as Chronic Fatigue Syndrome (CFS), or ME/CFS, is a complex, debilitating chronic illness that affects an estimated 250,000 people in the U.K. including 7500 men, women and children in Northern Ireland. Despite its prevalence, M.E. remains one of the most misunderstood and misrepresented medical conditions, leaving many patients struggling without adequate care or support. It is a multi-system disease that affects the immune, neurological, and energy-production systems of the body. Symptoms range from mild, moderate, to severe, with 25% of patients being very severe, requiring full-time care, being bed-bound and tube-fed for years. Early and accurate diagnosis and correct self-management advice, has been shown to offer patients the best chance of improvement, and to avoid a deterioration. The symptoms of M.E. are wide-ranging: Post-Exertional Malaise (PEM) is the defining, compulsory feature of M.E., it is a worsening of symptoms following even minimal physical, mental, or emotional exertion, and is not alleviated by rest. The effects are often delayed by 24-48 hours, and can take days or weeks to resolve, if at all. Activities that are manageable for healthy individuals, such as a short walk or reading a book, can cause profound fatigue, pain, and cognitive impairment for someone with M.E.. There are 3 other core symptoms of M.E.: debilitating fatigue, unrefreshed or disturbed sleep, and cognitive difficulties. Unlike ordinary tiredness, the fatigue experienced in M.E. is extreme, unrelenting, and not improved by sleep or rest. Patients often describe it as an overwhelming exhaustion that leaves them unable to function. The cognitive difficulties or "brain fog", present as short-term memory loss, poor concentration and information processing. This can severely impact the person’s ability to work, study, or perform everyday tasks. There are many other symptoms that people with M.E. may experience such as painful throats, widespread muscle or joint pain, or headaches; where the pain can be excruciating and difficult to manage. Orthostatic Intolerance /Postural Orthostatic Tachycardia Syndrome (POTS) describe a range of symptoms (with or without a fast heartbeat) causing a person to struggle to remain upright. Dizziness, light-headedness, or fainting when standing or sitting for extended periods, can result.Intolerance to light and noise, gastric disturbances and other symptoms can be experienced with M.E.. Importantly, all symptoms increase when patients try to push outside their new found ‘energy envelope.’ M.E. is a life-altering illness that often leads to significant social isolation, financial hardship, and huge emotional distress. An illness where the stigma and misunderstandings surrounding the illness, impacts greatly upon individuals and their families. People with M.E. have a lower quality of life compared to people with M.S., lung cancer, heart disease or depression. The National Institute for Health and Care Excellence (NICE) Guideline for ME/CFS NG206, October 2021, marked a significant step forward in the recognition and treatment of patients with M.E. Key changes to guide doctors include: - Emphasis on patient-centred care, acknowledging the impact of stigma and disbelief. - A ban on Graded Exercise Therapy (GET) due to potential harm to patients. - A revised approach to cognitive behavioural therapy (CBT) - not as a cure, but as a supportive tool. - Guidance on symptom management, pacing, and individualised care plans. This guidance reflects growing biomedical research and patient advocacy, ensuring better understanding, improved care, and enhanced quality of life for people with ME/CFS. There are no specialist M.E. services in Northern Ireland and the leading charity, Hope 4 ME & Fibro N.I, has spearheaded a campaign for adequate NHS services and a clinically-led M.E. service, since 2011. Founded by Joan McParland MBE, who developed a sudden-onset viral illness in 1999, the charity provides vital support and advocacy for people with ME, Fibromyalgia and now also Post Covid-19 M.E., a predicted increase of a post-viral illness resulting from the pandemic, Support for patients and their carers is offered by this all-volunteer led charity, run by patients and their family members and guided by medical and scientific expert advisers. The charity hosts monthly Zoom support meetings with specialist speakers, conferences featuring leading experts, and hosts a number of Facebook Pages, offering crucial lifelines to this patient community. With hard-earned, prestigious awards and global recognition for their awareness and education initiatives, the charity is committed to empowering patients, investing into biomedical research, and advocating for the best possible care.Joan’s journey with M.E. will be familiar to many, that of having a much-loved career, a happy family life and vibrant social life, to sudden, severe chronic illness. As she explains: “Since 1999, my experience of NHS healthcare for M.E. and the lack of education, the stigma and dismissal came as a shock. I spent just under a decade in a darkened bedroom, unable to tolerate noise or light while thinking “how could this be possible? and why? somebody has got to do something.” As demand for support grew and the group became an official charity in 2014, it has hosted 16 major conferences with expert global speakers, on ME/CFS and Fibromyalgia, and provided presentations for GP Surgeries, and many other organisations. As there is currently no formal education on M.E. in medical training, the charity has also addressed this issue by providing awareness and education events in partnership with Queen’s University Belfast since 2017, and more recently also working with Ulster University. In October 2022 – the charity launched a unique 360 Virtual Reality video ‘Discover M.E. - Hidden Lives Virtually Uncovered’, awareness and education tool for healthcare providers. Discover M.E. is a short animated film, giving insights into the lived experience of six Northern Ireland patients and carers, it has won 4 international film awards to date. Healthcare providers can avail of this two-part introduction to M.E. for FREE and also receive an accompanying, fully CPD certified, information pack. World M.E. Day, observed on May 12th highlights the millions of lives impacted by M.E. and associated illnesses. The charity is honouring those affected and amplifying their voices, by marking this day also in Northern Ireland. A number of events have been organised for May awareness, including screenings of the Discover M.E. film, supporting the full-length M.E. documentary ‘UNREST’ to medical students in QUB. Although this event is restricted to medical students,the charity will announce other opportunities on their website, when dates are secured for public viewing. Another silent demonstration will be held at the main gates of Stormont buildings and 19 healthy friends and relatives of the charity’s member James Walton, who suffers from M.E., will be running the Belfast Marathon to raise vital funds for the charity. Various Council buildings across N.I. will be lit up, as has been the charity’s tradition since 2013, when the quarter of a mile long, Craigmore Viaduct shone spectacularly in blue, during the night sky. The image was captured by a local newspaper photographer, and was shared over 2500 times around the globe from the esteemed biomedical research charity, M.E. Research UK Facebook Page.Information on May 12th awareness, in-person and online events, and fundraisers can be found by following the charity’s social media outlets. Facebook Announcements : https://www.facebook.com/Hope4MEFibro W: www.hope4mefibro.org E: hope4mefibro@outlook.com T: 07712892834 Information only line (weekday afternoons 2pm-5pm please)  

4th February 2025 monthly meeting - Dr. Pamela Bell -Living well with Pain- M.E.- Fibromyalgia- Long Covid   Dr. Bell is Chair of the Pain Alliance Northern Ireland and has been a valued colleague to the charity for over a decade.   She played a vital part in the Patient & Client Council N.I., Fibromyalgia Focus Group and M.E. Focus Group formed in 2013.   The main outcome of the Fibromyalgia Focus Group was the Northern Ireland Pain Summit in 2016 to mark the launch of the new care pathway for Fibromyalgia patients in N.I. ========================= Date Tuesday 4th February 2025 Time: 7pm-8pm Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm ========================= Zoom link: In our members only Facebook group ========================= Recording We will be recording the meeting for the members only page on Facebook. Please let us know before the end of the meeting if you don't want wish to be in the recording and we will edit the video

7th January 2025 monthly meeting - Community Advice (included Q&A session) Facilated by Community Advice Specialist  ========================= Date Tuesday 7th January 2025 Time: 7pm-8pm Schedule: Zoom room opens: 6:45pm Speaker: 7pm-8pm Closing discussion: 8pm-8:15pm ========================= Zoom link: In our members only group  =========================

The charity has pledged £2500.00 to ME Research UK Double Donations, Christmas Challenge as what better time to invest in global biomedical research projects, as when there’s an opportunity to DOUBLE this investment to £5000 at Christmas!🎄 🎅    ME Research UK requires match funding Pledges for its Investing in ME research globally - 2024 campaign before the pledge deadline on 30/08/2024, 17:00!   By becoming a Pledger you are committing to provide match funds. These funds will be used to double donations made to the charity during the campaign. 

We are delighted to have secured full registration with the Fundraising Regulator and extend our gratitude to all members and supporters who fundraise, donate and volunteers who help in any way.    The Fundraising Promise. This promise outlines the commitment made to donors and the public by fundraising organisations which register with the Fundraising Regulator. Those who register with the regulator agree to ensure their fundraising is legal, open, honest and respectful. The standards for fundraising are set out in the Code of Fundraising Practice.   We will commit to high standards We will adhere to the Fundraising Code of Practice. We will monitor fundraisers, volunteers and third parties working with us to raise funds, to ensure that they comply with the Code of Fundraising Practice and with this Promise. We will comply with the law as it applies to charities and fundraising. We will display the Fundraising Regulator badge on our fundraising material to show we are committed to good practice. We will be clear, honest and open   We will tell the truth and we will not exaggerate. We will do what we say we are going to do with donations we receive. We will be clear about who we are and what we do. We will give a clear explanation of how you can make a gift and change a regular donation. Where we ask a third party to fundraise on our behalf, we will make this relationship and the financial arrangement transparent. We will be able to explain our fundraising costs and show how they are in the best interests of our cause if challenged. We will ensure our complaints process is clear and easily accessible. We will provide clear and evidence based reasons for our decisions on complaints. We will be respectful   We will respect your rights and privacy. We will not put undue pressure on you to make a gift. If you do not want to give or wish to cease giving, we will respect your decision. We will have a procedure for dealing with people in vulnerable circumstances and it will be available on request. Where the law requires, we will get your consent before we contact you to fundraise. If you tell us that you don’t want us to contact you in a particular way we will not do so. We will work with the Telephone, Mail and Fundraising Preference Services to ensure that those who choose not to receive specific types of communication don’t have to. We will be fair and reasonable   We will treat donors and the public fairly, showing sensitivity and adapting our approach depending on your needs. We will take care not to use any images or words that intentionally cause distress or anxiety. We will take care not to cause nuisance or disruption to the public. We will be accountable and responsible   We will manage our resources responsibly and consider the impact of our fundraising on our donors, supporters and the wider public. If you are unhappy with anything we’ve done whilst fundraising, you can contact us to make a complaint. We will listen to feedback and respond appropriately to compliments and criticism we receive. We will have a complaints procedure, a copy of which will be available on our website or available on request. Our complaints procedure will let you know how to contact the Fundraising Regulator in the event that you feel our response is unsatisfactory. We will monitor and record the number of complaints we receive each year and share this data with the Fundraising Regulator on request.

Virtual reality education on Myalgic Encephalomyelitis for medical students and healthcare professionals: a pilot study   The impact of the Discover M.E. experience as an educational tool for medical students and primary care-based HCPs, was evaluated by a Masters Psychology student (Tara Anderson) at Queen’s University Belfast (QUB), as her final year thesis research project.    The results indicated that participants showed both increased knowledge and empathy following the immersive VR experience, suggesting that the Discover M.E. video, may be beneficial in medical education in increasing both levels of M.E. knowledge and empathy. Tara Anderson - School of Nursing and Midwifery, Research Assistant, School of Nursing and Midwifery came on board the charity as a volunteer in 2019, to promote the use of Discover M.E. virtual reality headsets for medical students and went on to publish this study in: BMC Medical Education on 17th September 2024. Read full paper HERE One of the peer reviewers commented: “The present manuscript is a valuable exploration of the potential benefits of VR in medical education, centring on a condition that requires more visibility and understanding in the given healthcare settings. The authors’ contribution is a vital part of recognising and addressing the educational agenda regarding ME/CFS.”  

Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a profoundly disabling chronic condition, often characterised by debilitating fatigue, post-exertional malaise, unrefreshing sleep and cognitive difficulties.    Despite its high impact on quality of life, there remains a persistent and worrying gap in awareness, knowledge and empathy within healthcare education and practice.    Read the research paper in BMC Medical Education (2024)   In recognition of this educational deficit, the authors evaluated an immersive virtual reality (VR) experience called “Discover ME”—developed in partnership with Hope 4 ME & Fibro NI—to explore whether such an approach could boost both knowledge about ME/CFS and empathy for people living with the condition.    Using a pilot quasi-experimental design with medical students and primary-care professionals (n = 43), the study found statistically significant improvements in both knowledge (medium effect size) and empathy (large effect size) immediately following the VR experience.    These findings are especially important against a backdrop of widely documented low levels of ME/CFS‐related teaching in medical education, frequent reports of stigma and minimisation of the illness, and absence of diagnostic biomarkers.    At Hope 4 ME & Fibro NI we believe that meaningful change in patient experience begins with transformation in education and awareness. This study demonstrates that innovative tools such as VR can open new avenues for engaging future and current health-care professionals, challenging preconceptions, and ultimately improving how ME/CFS is understood and managed.   17/09/2024  Back to top

Thank you to James McCullough and members of the Education Authority and Local Council, Fermanagh & Omagh Area Youth Service, ‘Omagh Youth Voice’.   James has been a volunteer for the charity for many years as his Mum Aileen suffers from severe M.E. and he has been raising awareness, fundraising and now even giving talks on M.E. to fellow members of the Omagh Youth Group! The Group marked the 55th year since the World Health Organisation classified M.E. as a distinct neurological condition by organising this wonderful awareness event of lighting up a bridge in Omagh with tea lights!    We are very much looking forward to the Youth Group’s next awareness/education project of making a film on PEM, in development since last year.    Thanks to official photographer Tony Moore Fine Art Photography for capturing the event and we very much appreciate the support and efforts of all the members of the Youth Group. (James is in front row, second from the left)  #WeLoveOurVolunteers  

On 15th June 2025,  ALL Northern Ireland MLAs and MPs received an email from Hope 4 ME & Fibro N.I. charity, seeking cross-party signatures on a letter to Health Minister Mike Nesbitt.  We are calling for support of the U.K. ‘My Full Reality – Delivery Plan for ME/CFS’. We believe the ME/CFS Delivery Plan for England offers a valuable opportunity for Northern Ireland to take action and to consider adapting its key recommendations. The response from MLAs has been good but can be made even better with YOUR help.  Please simply tag your elected representation under this post or request a copy of the email to forward to your MLA/MP yourself. Thank you in advance.  Our effort aims to ensure people with M.E. receive the healthcare equity and evidence-based services long overdue in Northern Ireland. (Latest update: The end of June publication date for The Delivery Plan has been delayed giving the charity more time to collect support)  On 28th June, a health department spokesperson would only say the plan would be published “shortly”.

93% of QUB Medical Students Want M.E. Education  Analysis of Hope 4 ME & Fibro N.I., screenings of UNREST documentary and  of ‘Discover M.E. - Hidden Lives Virtually Uncovered’ film at Queen’s University Belfast.  (May 2024)  We are grateful to QUB for inviting us back for the 4th year and a date has been confirmed for May 2025. The event sought to foster discussions around the lived experiences of #MyalgicEncephalomyelitis patients and the systemic challenges they face. Some students commented on how the films affected them personally, including:  • “Thank you so much for educating us about this in such an impactful way- I will never forget it.”    • “ I feel like this talk and movie has taught me more about an illness than anything I have learnt in my first year studying medicine.”    • “ Excellent, it is great to raise awareness on illnesses that are often hidden but impact people significantly”  Read more here: https://tinyurl.com/ups9wnft  Here

Northern Ireland Health Minister Robin Swann: A Global Voice for World M.E. Day 2024   Minister Swann and the Northern Ireland Department of Health agreed to become a World ME Alliance initiative, global voice for M.E. in response to lobbying by Hope 4 ME & Fibro N.I.  In his message of support, Minister Swann recognised the need for greater understanding, improved services and meaningful action for people living with Myalgic Encephalomyelitis (M.E.) in Northern Ireland.   The Significance of This Recognition: Signal to healthcare professionals — When a government minister takes this on, it encourages clinicians, commissioners and administrators to take M.E. more seriously. A morale boost — For patients, caregivers and advocates — often isolated in their struggles — knowing that the challenge is being heard at the top can be profoundly motivating.   This public backing brings vital visibility to a community too often ignored, and we thank the Minister for standing with us in our campaign for recognition, specialist care and research. 2024 marked the 55th year since the World Health Organisation classified M.E. as a distinct neurological entity.    Minister Robin Swann also showed support and encouraged people to visit local libraries, all accross the region, who hosted our Discover M.E. N.I. Library Tour. In addition, Stormont Building, seat of the N.I. Legislative Assembly, was lit up blue to mark the 10th anniversary of Hope 4 ME & Fibro N.I. gaining official charity status.    Watch the unprecedented short video here:     

May 12th Awareness Belfast billboard the charity erected as close as was available to the Department of Health headquarters and Stormont (the home of the devolved government) in Belfast. It’s crucial to keep pushing for the full implementation of the updated NICE guideline for M.E. (NG206) in Northern Ireland because: 👉 Protecting Patients from Harmful Practices The old guidance recommended Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as treatment/cures. NG206 officially removes GET and warns against forcing activity increases. Without proper implementation, outdated treatments could continue to harm people with M.E. 👉 Ensuring Doctors Follow the Best Scientific Evidence The new guideline reflects modern biomedical research, recognizing M.E. as a serious, disabling, multisystem disease. Doctors need to be aware of this so patients aren’t dismissed, misdiagnosed, or mistreated. 👉 Access to Proper Care & Support Northern Ireland still lacks specialist M.E. services. NG206 calls for a person-centred approach, including specialist input, symptom management, and support for severe patients. If the guideline isn’t implemented, patients will continue to be left without appropriate care. 👉 Recognising M.E. as a Serious Condition M.E. is life-changing and, for some, life-threatening. Full implementation of NG206 would help shift perceptions, ensuring that patients are treated with dignity, respect, and proper medical care. The Fight Isn’t Over Without action, NG206 will remain just words on paper in Northern Ireland. Patients need real change—not just promises. That’s why we must keep fighting to make sure this guidance is put into practice.  Liz Kimmins MLA

13 Years Campaigning Timeline from 2011 & still no specialist M.E. services in Northern Ireland. This factual timeline shows the difficult journey the charity has traveled in advocating for the estimated 7500 M.E. patients we represent, yet Northern Ireland remains without an M.E. Clinical Lead after a disastrous attempt by HSCB to commission services in 2018.    The saga continues.......   12th May 2024

2024 - World ME Day - Stormont Glows Blue to Celebrate 10 Years of Hope 4 ME & Fibro NI   Stormont, the heart of Northern Ireland’s devolved government, was lit up in blue to celebrate the 10th anniversary of Hope 4 ME & Fibro Northern Ireland becoming a registered charity.   Since our founding in 2011, we’ve been dedicated to supporting people living with Myalgic Encephalomyelitis (M.E.) and Fibromyalgia, raising awareness, educating and campaigning for recognition and specialist services.   Seeing Stormont bathed in blue is a wonderful reminder of the community, courage, and hope that have brought us this far—and a celebration of everyone who has joined us on this journey. Back to top

The countdown is on for biggest and best yet,  ME May awareness events in Northern Ireland with just 9 days to go. Our first event kicks off on 6th May with our call to action, 10,000 digital bursts at 10 locations in Northern Ireland’s capital city. We are indebted to our volunteer Gary Campion who spent months selling online raffle tickets at just £3 a time, and raised all the £s to cover this part of our May Awareness campaign!   The charity would appreciate photographs shared on social media from anyone or their family members, who are able to get to any of the glider and bus stop locations as listed below) just watch for our poster, snap a photo beside it and don’t forget to tag the charity please)   Thanks to Stevie Dunseth for his never-ending patience!  Clear Channel Northern Ireland

The charity will be kicking off May Awareness Month 2024 tomorrow, by sharing the outstanding neurographic art work from our patient members of the HOPE Online Craft Group.    We are very grateful to the Craft Group Coordinator and founder Claire Kennedy Artist and designer, Cofounder Aileen Mc Cullough, assisted by Kathryn Kitty McGowan  

We’re having a very special Blue Sunday virtual party 🎉 from 2pm to 3pm on Sunday 19th May to mark the 10th Anniversary since the charity was granted official charity status.  Did you know the home of Northen Ireland Excutive Stormont Building, went blue on May 12th to mark the occasion too!  All welcome! To join in the celebrations and to support our work, if you can, please donate the cost of a coffee and cake here 👉  https://donate.giveasyoulive.com/fundraising/blue-sunday-2024-for-hope-4-me-and-fibro NB: There is no obligation to donate! The idea is to dig out your best china or favourite mug, add some lovely cake or favourite food, wear something blue/purple, paint your nails blue/purple or join with camera off!  We look forward to connecting online with old friends and new for #bluesunday 🥳  Topic: Hope4 ME&Fibro's Zoom Meeting Time: May 19, 2024 02:00 PM London Join Zoom Meeting https://us02web.zoom.us/j/82072094696?pwd=NmRXV3ZuZzc3ajhQOWZGUHV3azRlUT09 Meeting ID: 820 7209 4696 Passcode: 153774

Discover ME, a groundbreaking VR film is coming to a city near you! The Discover ME Experience is a unique, two-part awareness and educational introduction to M.E. (Myalgic Encephalomyelitis) We’ve teamed up with Libraries NI to deliver the VR experience across 13 public libraries in the country, including: ⭐ Omagh Library ⭐ Derry City Library ⭐ Antrim Library ⭐ Lisburn Road Library ⭐ Portadown Library ⭐ Newry Library ⭐ Belfast Central Library All you have to do is show up to experience the VR film. We hope to see you there!  

The Hope Team were out in force at Queen’s University Belfast yesterday, delivering the Discover M.E. Experience and screening of #UNREST film to medical students.   Hope Craft Group Team also had a fabulous display of their art work on PEM  Left to right in pics - Tara Anderson, Eilidh Gilmour Linda Campbell (Eilidh) and Joan.  #WeLoveOurVolunteers 

Thank you to Portadown Library who hosted an information stand for Hope 4 ME & Fibro Northern Ireland Crafy Group Display, marking the 55th anniversary of ME being officially recognised as a disease by the World Health Organisation,   Visitors found out about the support and activities provided by the charity. They also got an opportunity to #DiscoverME and experience the impact of the condition with Virtual Reality.   Craft Group volunteers from left, Chloe and Kathryn Magowan, Claire Kennedy (Craft Group Facilator), Portadown Libruary Administrator and Rosalind McKinley. 

Discover ME 13 library tour launch at Belfast Central Library on 10th May 2024. Pictured from left, Linda Campbell (chair, Hope 4 ME & Fibro), Professor Deepa Mann-Kler (CEO, Neon & Ulster University professor), Joan McParland MBE (Hope 4 ME & Fibro founder), Lord Mayor Councillor Ryan Murphy and Julie Reid (deputy head of services,   Libraries NI) at the launch of the Discover ME 13 library tour at Belfast Central Library on 10th May 2024.   The Discover ME campaign has been organised by Hope 4 ME & Fibro NI, as part of an ongoing initiative to raise awareness for the medical conditions Myalgic Encephalomyelitis (M.E.), Fibromyalgia, Long Covid and other post viral syndromes – all bearing similar symptoms.   To watch the film go to  Here

  Your Story Matters! Do you live in Northern Ireland with M.E., Fibromyalgia, or Post-Covid M.E.? We want to hear from all members, but we are especially looking for men’s stories right now to help balance voices in our awareness materials.   We’re creating new brochures & website features to raise awareness, fight stigma, and push for better care. We need your story and a photo to show real people living with these illnesses. Share your experience – it could change how people see M.E. Fibromyalgia and Post-Covid M.E. forever. Email your story & photo to hope4mefibro@outlook.com by end of August please. Thank you in advance    Hope 4 ME & Fibro NI – Building bridges to a better future.

2022- 2023 We publish our annual reports and accounts here to provide clear, accessible information about our work, our governance, and how we use our resources to support people living with M.E., Fibromyalgia and Post-Covid M.E. across Northern Ireland.   These reports are filed with the Charity Commission for Northern Ireland and reflect our commitment to transparency and accountability.     Trustee Annual Report 2022 – 2023 can be read Here   Financial Report 1/042022 to 31/03/2023 can be viewed Here   Thank you to all our volunteers, members and supporters who make our work possible.      31/03/2025  

2019 — Breakthrough Leadership in Tackling Health Inequalities Hope 4 ME & Fibro Northern Ireland was first officially invited to NICON (Northern Ireland Confederation for Health and Social Care conference) in 2019, when Joan was recognised as a “breakthrough leader” in tackling health inequalities and advancing the rights and care of people with M.E. in Northern Ireland.   The recognition reflected years of grassroots advocacy — campaigning for diagnostic pathways, specialist services, and fair access to care. The award shone a light on the deep inequality faced by people with ME: delayed diagnosis, lack of services, and inconsistent support across regions.         2022 — Bringing ‘Discover M.E.’ to the Table Hope 4 ME & Fibro NI returned to NICON 2022 to present Discover M.E., virtual reality experience, a unique educational resource to: Improve early recognition and shorten diagnostic delays; Equip primary care teams with practical, evidence-informed guidance; Promote specialist referral pathways and community-based support; Share lived-experience insights to shape services that truly meet patients’ needs.         Why This Matters ME remains widely misunderstood. Its hallmark, post-exertional malaise, can make standard rehabilitation harmful if applied without specialist knowledge. Events like NICON help shift the system from neglect to understanding: Early diagnosis can save years of suffering. Trained clinicians prevent harm from inappropriate treatments. Clear pathways connect patients with the right care and support.     At NICON 2022, we also worked with healthcare providers to share information on the DecodeME Study genetic study, encouraging clinicians to help raise awareness and support patient recruitment across Northern Ireland.     Looking Ahead We remain grateful to NICON for recognising our work and providing a platform to push for change. Hope 4 ME & Fibro NI continues to turn recognition into results — better training, clear pathways, and real specialist provision for people with M.E. across Northern Ireland.   Oct 2022 Back to top

Thank you to Bateman Horne Centre for this beautiful message of solidarity and for sharing Discover M.E. "Dear Friends, As I sit down to write this message, my heart is filled with an overwhelming sense of admiration and love for each and every one of you. I want you to know, from the depths of my soul, that we see you. We see the battles you face every single minute with M.E., and we are in awe of your strength, resilience, and unwavering spirit. In observance of ME/CFS Awareness, let us all join together to "Recognize M.E."—to truly understand the challenges and triumphs faced by those living with myalgic encephalomyelitis.  We are honored to introduce and share with you this illustrative video, "Discover M.E.," stunningly crafted by our care partners in Northern Ireland at Hope 4 ME. This work of art captures the essence of the ME/CFS journey, shedding light on the unseen and the mighty resilience that defines their spirit. https://www.youtube.com/watch?v=yFsaBQ7XXGU We invite you to experience and share this powerful video, as it raises awareness and fosters unity in our global community. Please know that you are loved, you are valued, and you are never alone. Your presence in our community impacts and adds to our lives in ways you may never fully realize. Thanks for being you. May we be stronger together. With heartfelt gratitude, all our love and admiration, Callie on behalf of the entire BHC Team" #MECFS #MECFSAwareness #Hope4ME #MECFSSupport

We are delighted to have been accepted as members of the World ME Alliance!    "Originally founded in 2014, we are a unique alliance of ME organisations from around the world. Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.  We are keen to extend our connections and would welcome new member organisations. Find out more here.   Why is this important? Before the COVID-19 pandemic, there were between 17 and 30 million people living with ME across the globe. However, COVID-19 has triggered a surge in the number of people affected by ME, and we now estimate that over 55 million individuals are living with the debilitating symptoms of ME. This has a devastating impact, not just on those with the disease but on their family, friends and their countries’ economy too. By collaborating we increase our reach, impact and knowledge base. We can build stronger campaigns, share resources and engage international bodies, such as the World Health Organization.   A dedicated space for ME organisations We create a dedicated space for organisational leaders to share the knowledge, experience and challenges they face in their countries. We acknowledge that the approach to ME treatment and research varies widely across the world. For this reason, our World ME Alliance prioritises space for uplifting organisations with local expertise.    Advocacy on an international stage The World Health Organization (WHO) has the power to impact real change for people with ME and other post-infectious diseases. This is not currently happening. We need leaders from the WHO to begin to prioritise quality of life as well as death from Non-Communicable Diseases such as ME. To do this, we need to join with organisations working around other diseases to create a unified lobby.  FIND OUT MORE ABOUT WHAT WE DO   From World ME Alliance website: Hope 4 ME & Fibro NI Joins the World ME Alliance "As we extend our reach across the globe, we are pleased to have one of the foremost ME organisation in Northern Ireland joining us. Hope 4 ME & Fibro Northern Ireland have an impressive track record in their country over the past decade, and we look forward to seeing how our collaboration can create opportunity for both our organisations. This registered charity started out as a support group, but has grown immensely over the years; achieving the Queen’s Award for Voluntary Services in 2020. They have been particularly driven in their aim of raising awareness among politicians and improving healthcare professional education. By holding ME and Fibromyalgia conferences in the Northern Irish parliament buildings, Stormont, and bringing in eminent researchers, campaigners, and medical professionals from across the world to speak about their work, the Charity have been able to demonstrate both the impact of the disease, and ways in which we can and should be supporting people with ME. On the healthcare professional education front, Hope 4 ME & Fibro NI have created a series of five educational webinars on ME, targeted at healthcare professionals. This series of webinars aimed to explore the radical changes taking place within the new proposed National Institute for Health and Care Excellence Guideline (NICE) for ME/CFS, and the important implications arising from the developing ‘Long Covid’ crisis. The webinar series brought together global experts in the field of ME/CFS, to share their knowledge and experience. These are now hosted directly on the official Health & Social Care Northern Ireland Clinical Education Network website, and in the first two months from release, have been viewed over 900 times."  Watch the webinar yourself here Through the COVID-19 pandemic, the organisation has continued to provide support for members through online events, conferences and social gatherings, craft sessions and other activities. Prior to this they organised in person meet ups, and aim to begin providing this again when safe to do so. You can find Hope 4 ME & Fibro Northern Ireland on facebook, twitter, or check out their website."  Back to top

Hope 4 ME & Fibro Northern Ireland Joins CPD Certification Service as an Accredited Provider   We are very proud to announce that Hope 4 ME & Fibro Northern Ireland has now been approved as a CPD provider by the CPD Certification Service (Provider No: 17157). See the Demystifying M.E. learning resource listing Here This is a significant milestone for our charity. As a volunteer-led organisation campaigning for recognition of Myalgic Encephalomyelitis (ME), and for consultant-led M.E. services here in Northern Ireland, this accreditation strengthens our ability to support education, awareness-raising and professional development in the field.  What this means Our seminars, workshops, training courses and online webinars can now be recognised under the CPD framework via the CPD Certification Service.   Health & well-being professionals, charitable sector workers, clinicians, and allied health staff can engage with our content knowing it meets CPD standards, adding value to their ongoing professional development. This accreditation aligns with our core mission: advancing understanding of M.E. improving patient-care pathways and advocating for better services.   Why this matters for M.E. M.E. remains an under-recognised condition despite the profound impact on quality of life. By aligning our educational work with a formal CPD-approved structure, we are helping to raise the standard of awareness and competence among professionals, thereby supporting improved patient-centred care and service delivery. As we continue our fight for recognition and specialist services, this development strengthens our credibility in the healthcare and education sectors.   What’s next We invite healthcare professionals, service managers and charity / support-group personnel to subscribe or get in touch to join our self-directed learning course.  If you represent a clinic, trust or charitable organisation interested in tailored CPD sessions, please contact us to discuss how we can support you.    January 2022  

Hope 4 ME & Fibro N.I. Queen’s Award for Voluntary Service - Marked by Newry, Mourne & Down District Council     In June 2021, the charity was honoured with the Queen’s Award for Voluntary Services, with Special Designation, the highest accolade given to local voluntary groups across the U.K. This award, is an MBE for volunteer groups, recognising the outstanding contributions made by volunteers in their communities, it is awarded for life.     The charity was awarded the additional Special Designation, for providing impactful support to their community during the Covid-19 pandemic in 2020. This Special Designation was awarded for ensuring nutritious meals—including Christmas dinners—were delivered straight to patients’ homes all across the Province, along with heating, extra care, and essential living costs. This vital support was made possible thanks to the Charities Aid Foundation’s Covid-19 Emergency Fund.   The continuing pandemic delayed the official awards ceremony in Newry until October 2022. When we were finally able to gather, it was a proud moment to see our volunteers’ tireless efforts formally recognised with this national honour.    In May 2022 our incredible volunteers were represented at the Queen's Award, Buckingham Palace Garden Party by our then Chair, Linda Campbell, and Dr. William Weir our dedicated Medical Advisor.    In October 2022, Newry, Mourne and Down District Council Chairperson, Councillor Michael Savage hosted a civic reception for the Bessbrook based charity. The event was attended by our Founder Joan McParland,  May Patton (Joan’s Mum) Linda Campbell and son David, Anne Norrie and daughter Hollie, Karen Calder, Councillor David Taylor, and Northern Ireland representatives for the Queen’s Award for Voluntary Service - to mark this honour in the Council District.   The Lord Lieutenant of Co Armagh, The Earl of Caledon, presented the Queen’s Award for Voluntary Service certificate and engraved trophy, and we were also honoured with a beautiful engraved vase from the Council to mark this achievement. Read the Council’s official announcement on their website. Here   The Queen's Award for Voluntary Services is a lasting tribute to the dedication and resilience of every single volunteer in Hope 4 ME & Fibro N.I., who gives their time and heart to our cause.      

  M.E. Webinar Series for Healthcare Professionals Hope 4 ME & Fibro Northern Ireland organised a five-part webinar series on Myalgic Encephalomyelitis (M.E.), recorded and produced in partnership with the HSC Clinical Education Centre. The series was created for nurses, midwives, and Allied Health Professionals and remains invaluable for anyone with an interest in M.E., or Post-Covid M.E.   Access the Series Originally hosted on the HSC Clinical Education Centre (Page Tiger) from 2021 to the end of 2024, the full webinar series is now freely available on our YouTube channel. 👉 Watch the  M.E. Webinar Series        Exploring Change and Understanding These webinars take you through the radical changes introduced in the new NICE Guideline for ME/CFS (NG206) and the lessons emerging from the Long Covid crisis. Experts from medicine, academia, and lived experience share their insights on best practice, patient care, and the evolving science around these complex conditions.   The series provides a unique opportunity to hear directly from international experts and patient advocates who are shaping the understanding of M.E. and post-viral illness.     Background While the NICE Guideline NG206 was first published in October 2021, it was not formally endorsed for Northern Ireland by the Department of Health (NI) until January 2022. The information shared in these sessions remains as relevant today as when first released — providing essential learning for clinical professionals across all disciplines.   Expert Speakers:   Professor Brian Hughes – Psychologist, National University of Ireland Galway; Hope 4 M.E. & Fibro N.I., specialist advisor   Professor Mark VanNess & Dr Michelle Bull – Experts in physiotherapy and exercise intolerance in ME/CFS   Dr Nina Muirhead – Leading clinician in ME/CFS research and medical education   Dr Nigel Speight – Renowned paediatric ME/CFS specialist   Lorraine Henry, Joan McParland, Kate Lesslor, Linda Campbell, & Rebecca Logan – Representing occupational therapy, policy, patient advocacy, charity leadership, and Long Covid medical insight   March 2021 Back to top    

Professor Brian Hughes - The Health & Social Care, Clinical Education Centre in Northern Ireland for hosting a series of five webinars on #MyalgicEncephalomyelitis on their website for nurses, midwives and Allied Health Professionals (and were available to all healthcare professionals)    We are delighted to share the series, now available on our YouTube channel Here   The webinars were organised by Hope 4 ME & Fibro Northern Ireland Charity and brought together experts in the field of ME/CFS to share their knowledge and experience.    These educational resources were aimed to explore the radical changes that were taking place at the time, within the new proposed NICE Guideline for ME/CFS, and the important implications arising from the #LongCovid emerging crises.    Whilst the new NICE Guideline on ME/CFS NG206 has now been in existence since October 2021, it was not formally endorsed as applicable to Northern Ireland, by the Department of Health NI, until January 2022 and not yet been fully implemented.    WEBINAR - 1  ‘New NICE Guidelines on ME/CFS (2021): How the Paradigm has Shifted’  Brian Hughes - Professor in Psychology, Galway University, Ireland, a member of the HSE (Ireland) National Working Group on Myalgic Encephalomyelitis, and serves as a Scientific Advisor to the charity Hope 4 ME & Fibro NI.   Purpose To give an overview of the NICE Guidelines on ME/CFS – past present and future, and how this affects the provision of patient care   Learning Outcomes • Outline the significant changes to ME/CFS diagnosis, management and treatment. • Appreciate "Illness Beliefs": treatments and management no longer advised, and why. • Reflect on how we got here: PACE Trial, CBT, and medical controversy. • Explore where we go next: modernising clinical practice and research.   Audience Health & Social Care  

This series of 5 webinars was organised by Hope 4 ME & Fibro Northern Ireland Charity, and recorded and produced by the HSC Clinical Education Centre for nurses, midwives and Allied Health Professionals.   The webinars were hosted on HSC Clinical Education Centre website Page Tiger from 2021 to the end of 2024. Watch the Series  Here   The webinars explored the radical changes taking place within the then, newly proposed NICE Guideline for ME/CFS, and the important implications arising from the Long Covid crises. The webinar brought together medical and other experts in the field of ME/CFS, to share their knowledge and experience.   Whilst the new NICE Guideline on ME/CFS NG206 has now been in existence since October 2021, it was not formally endorsed as applicable to Northern Ireland, by the Department of Health NI, until January 2022.   All 5 webinars are as applicable today, as they were when first produced in 2021. They are also appropriate for ALL healthcare professionals, and others with an interest, to watch and learn from.   Webinar Speakers The series featured expert presentations from: Professor Brian Hughes (Psychology, National University of Ireland Galway; ME specialist advisor roles)   Professor Mark VanNess and Dr Michelle Bull, focusing on physiotherapy   Dr Nina Muirhead, a leading clinician in CFS/ME research and medical education   Dr Nigel Speight, a paediatric ME/CFS authority   Lorraine Henry, Joan McParland, Kate Lesslor, Linda Campbell, and Rebecca Logan, representing occupational therapy, policy, charity leadership, and Long Covid medical insight    

Dr. Nigel Speight - The Health & Social Care, Clinical Education Centre in Northern Ireland hosted a series of five webinars on M.E.(MyalgicEncephalomyelitis) on their website for nurses, midwives and Allied Health Professionals (and were available to all healthcare professionals)    Symptoms & Diagnosis of M.E. in Children - Dr. Nigel Speight - WEBINAR 2 of 5     Purpose - To give an overview of M.E. in children and adolescents Learning Outcomes -  • Define the diagnostic features of ME/CFS in children • Appreciate the issues affecting school attendance • Explore reasonable adjustments required for children   We are delighted to share the series, now available on our YouTube channel Here     The webinars were organised by Hope 4 ME & Fibro Northern Ireland Charity and brought together experts in the field of ME/CFS to share their knowledge and experience.    

The charity organised this series of educational webinars on Myalgic Encephalomyelitis, hosted by the HSC Clinical Education Centre and are still available on their website.  We are delighted to have confirmation of 2051 views to date of this invaluable resource for healthcare providers.    Speakers include:  Professor Brian Hughes Professor Mark VanNess (The Workwell Foundation) Dr. Michelle Bull (Physios for ME) Dr. Nina Muirhead, Dr. Nigel Speight, Lorraine Henry from the Northern Ireland M.E. Condition Management Programme and the charity representatives Linda Campbell, Joan McParland and Rebecca Logan speaking on aspects of living with M.E. and Long Covid.  Link to the individual webinars Here

It is important to note that while the Patient & Client Council N.I. feature image references the establishment of an ME clinic for Northern Ireland in 2019, the service never became operational.   After eight years of sustained advocacy and engagement with the Health and Social Care Board (HSCB), Hope 4 ME & Fibro NI successfully pressed for the recruitment of an M.E. Clinical Lead — a long-fought milestone that finally acknowledged the urgent need for specialist M.E. services.     However, despite this breakthrough, no ME services were ever commissioned, and the appointed Clinical Lead eventually moved on without the opportunity to establish the clinic that so many had worked towards.   For the advocates and volunteers within the charity — many of whom are themselves severely ill with ME — this was a devastating blow. They had poured years of energy, limited health, and personal sacrifice into helping the system understand and act on the needs of this forgotten patient group.   To reach the point of success, only to have the promised service quietly abandoned, was another example of the shameful way in which people with ME continue to be dismissed and let down by the Northern Ireland healthcare system.   Some campaigners spoke openly about feeling they could no longer continue, having worked far beyond their physical capacity for an outcome that never materialised. Yet, even in deep disappointment, the charity refused to give up. This setback became another chapter in a much longer struggle — a reminder that recognition means little without action, and promises mean nothing without delivery.   A second attempt at recruitment was set in late 2019 but was cancelled last minute, due to Sally Burch bringing it to the attention of HSCB, that a senior consultant member of the interview panel, was confused in the role and job description criteria. No further attempts to establish dedicated M.E. services have been undertaken to date. (November 2025) We wish to acknowledge the efforts of our then trustee Sally Burch, who undertook specialist training, provided by the Health & Social Care Board (HSCB) to be part of the new M.E. Clinical Lead recruitment interview process in 2018.     Dating this article - 8 years after - the successful recruitment of an M.E. Clinical Lead for Northern Ireland. (To be continued.....)

Hope 4 ME & Fibro Northern Ireland has been proud to support the annual, global Millions Missing campaign, raising awareness of the scale, seriousness and invisibility of Myalgic Encephalomyelitis (ME) in Northern Ireland.   Since 2016 the charity has organised Millions Missing public visibility events, engaged with MLAs and pushed for specialist clinical services for those affected.   Watch NI Focal Point video coverage - Millions Missing 2016     What is Millions Missing? Millions Missing is a global movement of people with ME (and their allies) who symbolise “missing” bodies from everyday life — through empty shoes, installations, demonstrations and public actions — to illustrate the high number of people disabled, house‐bound or bed‐bound by ME.   Our Northern Ireland key actions September 2016: At the Stormont Estate in Belfast we joined an empty-shoes display bringing ME out of the shadows and into the political spotlight, calling upon the Stormont Executive and Health Minister to recognise and act.   October-November 2016: Local media reported on the campaign’s calls for proper services, noting that despite thousands of ME patients in Northern Ireland the health system was lacking specialist consultants, pathways and funding.   May 2017: 'Chasing Competent Care' annual conference, held in Stormont and incorporating Millions Missing display.   May 2018: In Newry at the Sean Hollywood Arts Centre we hosted a screening of the documentary UNREST along with a Millions Missing display to further raise awareness of what life with ME entails.   Robbie Butler MLA was our sponsor for the first Millions Missing demonstration at Stormont in 2016 and continues to support the charity in our campaign, said "Hope 4 ME and Fibro NI must be praised for their sterling work ensuring that these conditions do not slip beneath the radar of society when it comes to the Stormont Executive providing the necessary funding and resources to assist sufferers and their carers."  

Our Garden Office – A Milestone for the Charity Since 2011, our volunteers have, and continue to work from home, contributing their time and limited energy to helping others. As the charity grew, so too did the need for a dedicated space to store information packs, awareness materials, conference regalia, and other resources.   When Joan’s home could no longer accommodate the ever-growing supplies needed for events, our members came together to make something special happen. Thanks to their generosity, our Charity Garden Office was built and officially opened on 31st August 2016.   The office is uniquely special – it is situated between Joan’s house and on her mum, May's land. This thoughtful arrangement means the charity has a permanent base without any rent or rates, allowing every penny to go directly into our awareness, support, and advocacy work. The office is small but completely accommodating to the charity's needs.    The garden office was made possible entirely through the donations and support of our patient members and supporters. Donations included: The full cost of building the office. Carpet, swivel chairs, office desks, coffee machine, kettle and much more, all kindly donated. Filing cabinets and cupboards were generously donated by the Confederation of Community Groups in Newry   To mark the occasion, we hosted a celebration for members, also attended by the Lord Mayor of Newry Council (who carried out the official opening), local councillors, and board members from the Patient Client Council.                  Dozens of our members from all across N.I. made a huge effort to attend the event, which was filled with warmth and community spirit. A harpist provided light entertainment, and with the help of a rented marquee, everyone was able to gather comfortably to enjoy a hot buffet supplied by outside caterers, followed by tea and a special treat – the traditional “Hope” cake.   Our humble office symbolised the strength, unity, and optimism at the heart of our charity, as we continue building bridges to a better future for all of our M.E., Fibromyalgia and Post-Covid M.E. patient community.          

From Bessbrook to Japan, our blue light carried hope across the world! In 2013, our charity was recognised internationally as a leader in raising awareness and support for people living with M.E. and Fibromyalgia. That year, we were honoured to win the Global “Light Up The Night Challenge” set by the Canada-based 'May 12th Awareness organisation for International M.E. and Fibromyalgia Awareness Day.   Watch May 12th challenge with Craigmore Viaduct shown at (1.47 mins in) YouTube video:  Here   The project was made possible thanks to the generosity of our local community. Funds were raised through a lively fundraising evening featuring a Dolly Parton tribute band, a prize raffle and selling homemade cakes and pastries, which brought members of the public together in support of our cause.   On the night of the awareness event, the Newry Lord Mayor joined us for the official countdown, as council buildings across Northern Ireland lit up in solidarity. The highlight of the evening was the illumination of the iconic Craigmore Viaduct in Bessbrook—its 18 arches, stretching a quarter of a mile, glowing blue against the night sky.     The powerful image of the Viaduct was captured by a local newspaper photographer and featured on the front page of the Newry Democrat. It quickly travelled far beyond our local community, shared 2,500 times from ME Research UK’s Facebook page. Among the many reactions was a heartfelt comment from an M.E. patient in Japan who wrote,  " I am grateful, even from here.” This landmark achievement not only shone a light across Northern Ireland but also resonated worldwide, bringing hope and visibility to people with M.E. and Fibromyalgia across the globe. Dr. Vance Spence, Honorary President of ME Research U.K., pictured here at the Craigmore Viaduct during a visit to Northern Ireland, where he presented the vital research undertaken by the organisation at our 2014 annual conference in Stormont. Dr. Spence is also Scientific Advisor to our charity. 

The next All-Party Parliamentary Group (APPG) on ME meeting is taking place on: Wednesday 10 September, 4pm. * We need our Northern Ireland elected representatives to attend on behalf of the estimated 12,000 N.I. patients * The meeting will open the Group's enquiry into severe ME, with attendees hearing of its devastating impact, directly from people with lived experience. Invite your MP to attend using this template letter: Here Contact details for Northern Ireland MPs can be found here  Here Those giving evidence as part of the enquiry have been identified from our service users, in collaboration with the 25% M.E. Group, and a wider network of nominated individuals. Evidence will be provided either in a written format, orally/recorded, or live. Minutes from the meeting will be shared soon after the meeting has concluded, on the APPG's website.