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Hope 4 ME & Fibro NI, Strategic Priorities for M.E., Long Covid and Fibromyalgia: 2025 - 2028
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.
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.
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).
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