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A Bessbrook based charity, Hope 4 ME & Fibromyalgia NI has welcomed the results of the world’s largest genetic study into Myalgic Encephalomyelitis (M.E.) but has also highlighted that there is still no specialist services or commissioned care pathways for M.E. patients here. The study has confirmed a biological basis for the condition
The study, which includes participants from Northern Ireland, was led by the University of Edinburgh’s Institute of Genetics and Cancer.
The DecodeME study analysed the DNA of over 15,000 people diagnosed with M.E./CFS. The researchers identified eight genetic signals across the genome. These genetic differences, many of which are linked to the immune and nervous systems, provide long-awaited scientific proof that M.E. is not psychological but a serious, multi-system physical illness.
Hope 4 ME & Fibromyalgia NI was founded by Joan McParland MBE in 2011 and officially established as a charity in 2014. They are an all-volunteer, patient-driven organisation reliant solely on voluntary donations and small grants when available.
The charity provides vital support and advocacy for people with M.E., Fibromyalgia and Covid-induced M.E. across Northern Ireland, Ireland, and the UK.
Speaking of the news Joan McParland MBE, said: “We’re proud that patients in Northern Ireland contributed to this vital research. DecodeME has given scientific proof of what patients have known for decades, that ME is a serious, biological illness.”
The findings follow a series of significant developments for M.E. advocacy in Northern Ireland, including growing political support for specialist services and renewed public awareness campaigns. In May, 21 MLAs co-signed a letter to Health Minister Mike Nesbitt. The letter urged the Department of Health to adopt the My Full Reality: Delivery Plan for ME/CFS as a framework for local service provision.
Joan McParland added: “The science is clear. The need is urgent. This is a public health failure.
“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.
“We urge the Department of Health and our elected representatives to respond to this evidence and finally deliver the services people with M.E. desperately need.”
Despite the number of people in Northern Ireland living with M.E. increasing from 7,500 to 12,500 in recent years Joan explained there is still no clinical lead, no specialist services and no commissioned care pathways for M.E. patients in the region.
Professor Tom Trinnick OBE, who retired as Clinical Director of Laboratory Medicine at South Eastern Trust in recent years welcomed the news.
Also a medical advisor for Hope 4 ME & Fibro, he said: “The groundbreaking DecodeME study of the genetics of patients with ME/CFS shows significant genetic differences in patient DNA compared to the general population.
“This will shape future research and focus treatment for this disabling chronic condition. These patients are very poorly served at present, often struggling with minimal or no support. This needs to change.”
DecodeME’s discovery reinforces the call for immediate investment in proper clinical care, professional education, and research across all regions. It also builds on recent awareness efforts by Hope 4 ME & Fibro NI. These include their World M.E. Day event at Stormont, which was attended by Health Minister Mike Nesbitt and a cross-party group of MLAs.
Joan McParland said: “The discovery of genetic differences by one of the UK’s most respected research institutions is a game-changer.
“This must put an end to outdated misconceptions and lead to proper medical education, specialist clinics, and funded research, including here in Northern Ireland.”
DecodeME is funded by the Medical Research Council and the National Institute for Health and Care Research (NIHR). Further analysis is ongoing. The current results offer vital biological clues into M.E.’s cause and progression, particularly in relation to immune response and chronic pain.
More information about the DecodeME findings can be found at decodeme.org.uk/initial-dna-results
Hope 4 ME & Fibromyalgia NI hold monthly Zoom support meetings, alongside annual conferences featuring leading experts, offer crucial lifelines to our community. To learn more about the work of Hope 4 ME & Fibro Northern Ireland, go to hope4mefibro.org
