Study confirms ME/CFS is not ‘all in the mind’ — Hope 4 ME & Fibro NI hails genetic discovery

Professor Tom Trinick OBE and Joan McParland MBE (Hope 4 ME & Fibro founder)

Hope 4 ME & Fibro NI hails DecodeME results as a ‘game-changer’ in fight for recognition and services

A landmark genetic study has confirmed a biological basis for Myalgic Encephalomyelitis (M.E.), providing long-awaited scientific evidence for what patients have known for decades.

Northern Ireland charity Hope 4 ME & Fibro NI has welcomed the results of the world’s largest M.E. genetic study, DecodeME, which includes contributions from people living with the condition across Northern Ireland. The research was led by the University of Edinburgh’s Institute of Genetics and Cancer.

The study analysed DNA from more than 15,000 people diagnosed with M.E./CFS (Chronic Fatigue Syndrome), identifying eight genetic signals linked to the immune and nervous systems.

The findings reinforce the understanding that M.E. is a serious multi-system physical illness — not psychological.

Key Findings from DecodeME:

• DNA analysis of 15,579 people with ME/CFS reveals eight significant genetic signals across the genome.

• These findings confirm biological causes of ME/CFS, not just effects — because DNA does not change after illness begins.

• The genetic differences are linked to both the immune system and the nervous system, aligning closely with patients’ lived experiences.

• At least two signals are linked to the body’s response to infection, while another has previously been found in people with chronic pain — strengthening evidence of neurological contributions.

Joan McParland MBE, founder of Hope 4 ME & Fibro NI, 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 breakthrough follows growing momentum in Northern Ireland for improved services and recognition. In May, 21 MLAs signed a letter to Health Minister Mike Nesbitt urging the Department of Health to adopt the My Full Reality: Delivery Plan for ME/CFS as a framework for local provision.

McParland continued:

“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 rising number of people living with M.E. in Northern Ireland — up from 7,500 to 12,500 in recent years — there remains no clinical lead, no specialist services, and no commissioned care pathways for patients.

Professor Tom Trinnick OBE, former Clinical Director of Laboratory Medicine at the South Eastern Trust and medical advisor for Hope 4 ME & Fibro NI, praised the discovery:

“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 findings build on recent awareness efforts in Northern Ireland. In May, Hope 4 ME & Fibro NI hosted a World M.E. Day event at Stormont attended by Minister Nesbitt and a cross-party group of MLAs.

McParland concluded:

“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). Ongoing analysis is expected to provide deeper insights into M.E.’s causes, particularly in relation to immune response and chronic pain.

For full DecodeME findings, visit: decodeme.org.uk/initial-dna-results

To learn more about Hope 4 ME & Fibro NI, visit: hope4mefibro.org