Meet our Founder
My story will be familiar to many, that of having a career, a happy family life and vibrant social life, to suddenly being plunged into severe ill-health as a result of a viral infection.
Since 1999, my experience of NHS healthcare for M.E. and the lack of education, the stigma and dismissal l’ve encountered still comes as a shock. I spent many years in a darkened bedroom unable to tolerate noise or light thinking “how could this be possible, and why, somebody has got to do something’.
Fast forward 11 years to 2010 and I'd slowly experienced a degree of improvement from being completed confined to bed.
I placed an advertisement in a local newspaper, telling the sorry tale of M.E. and called for support from others who were living the same nightmare. The response was unbelievable when dozens of patients and/or family members of patients turned up to meet in a nearby hotel to discuss similar stories of stigma, desperation and neglect.
Inspired by the offers of help and the evident need, slowly but surely a support group was formed in Newry in 2011. One year later after connecting with a researcher attending the annual Invest in M.E conference in England, I organised the group’s first N.I. biomedical conference on M.E. from my sickbed.
Still battling with the cognitive challenges of M.E, my new found skills through working on a laptop or iPad, enabled the impossible to happen! The N.I. conferences became an annual event attracting huge numbers of patients, healthcare providers and politicians. Alongside providing educational events, the charity went on to lobbying for specialist NHS services, a campaign now spanning 14 years.
" Undeterred by broken promises and pledges from the powers that be, my unwavering quest for truth and justice for patient remains steadfast”.
Whilst still coping with the life altering symptoms of M.E., 26 years on, I wish to give credit to the enormous support from my family who were instrumental in establishing and maintaining the support group since 2011, and the practical help they continue to provide towards the day to day running of the charity.
I remain thankful and privileged to have connected with so many incredible patients and their families over the years, and offer my sincere gratitude to all past and present committee members and volunteers for the charity, who all share the same passion and dedication.
On June 16, 2023, Joan was awarded an MBE (Member of the Order of the British Empire) in the King’s Birthday Honours List. The official UK Government website states that the honours recognise “extraordinary individuals helping to combat major challenges of our time.” Read here
She was invited to Windsor Castle by King Charles to receive her MBE at an investiture, with expenses being covered by the Northern Ireland Excutive. Unfortunately, due to the continuing restrictions that Myalgic Encephalomyelitis (M.E.) places on her ability to travel, special arrangements were made for her to receive the award instead at a ceremony held in Hillsborough Castle in Northern Ireland.
Joan was specifically honoured “For services to People with Myalgic Encephalomyelitis and to their Families and Carers in Northern Ireland.”
Colleen Steckel, equally acclaimed M.E. advocate and founder of North Carolina/Ohio ME & FM support group in 2014 and ME International Board Member goes in-depth on this honour. Read substack here
On Facebook
On X
On Instagram
