How the University is leading the world’s largest study of ME/CFS

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Scientists are still working to understand the causes of ME/CFS, but the University’s DecodeME study provides new insights into the disease and how it can be treated.

When Sarah Ford-Hutchinson, Head of Communications in the Department for Social Responsibility and Sustainability, was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) two years ago, she had a “gut-wrenching realisation that there is currently no cure”. 

“When you get diagnosed with a chronic long-term illness out of the blue it has this huge impact on your life,” she explains. 

“I first noticed symptoms when training for a long-distance walk called the West Highland Way. I had taken a week off to do practice walks, but each morning I woke up physically unwell and unable to get out of bed.

“After a few weeks, I wasn’t recovering and started to notice other symptoms which were similar to a friend who has ME: cognitive problems, muscle pain and constantly feeling like I had the flu. I contacted my doctor and after four months of persistent ill health and various tests, she gave me a diagnosis of ME/CFS. I was lucky; it takes some people years to get a diagnosis.

“Two years later, I’m still struggling with this illness. It affects every part of my life – including work – as I struggle with extreme fatigue and impaired cognition.”

ME/CFS is estimated to affect a quarter of a million people in the UK, of all ages and from all social and economic backgrounds. Its 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. The causes are unknown and there is currently no diagnostic test or cure. 

Sarah Ford-Hutchinson Photograph by Barrie Williams

Gender differences

Researchers behind DecodeMe, the world’s largest DNA study of the disease, are aiming to find genetic causes of why people become ill with ME/CFS. This should help us understand its causes and find treatments.

Led by the University, the study involves participants completing a questionnaire, and then in most cases being invited to provide a saliva sample.

The study is working towards a completion date of August 2024 for the DNA analysis, so is still recruiting participants.

However, it has published some initial results from the first 17,000 questionnaires, revealing that women tend to have more symptoms and co-occurring conditions than men.

The questionnaires included information on how long the respondent has had ME/CFS symptoms, when they were diagnosed, and whether they had any co-occurring conditions.

The study confirmed the well-established sex bias among ME/CFS patients, with women making up 83.5 per cent of respondents. Two-thirds (66.7 per cent) of women, and slightly more than half (52.7 per cent) of men, reported at least one active co-occurring condition. Similarly, 39.2 per cent of women and 28.6 per cent of men reported at least one inactive co-occurring condition. A condition was considered active if the participant had experienced symptoms in the preceding six months.

The most common active co-occurring condition was irritable bowel syndrome (41.3%), with clinical depression (32.4%), fibromyalgia (29.5%), anaemia (14.1%) and hypothyroidism (12.8%) also featuring prominently. Women also reported, on average, more symptoms than men – 42 compared with 36.

Professor Chris Ponting, study lead from the Medical Research Council Human Genetics Unit at the University’s Institute of Genetics and Cancer, says the aim of the study is to “shed light on why certain groups are more susceptible to ME/CFS than others”. 

He added: “ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started.” 

Photograph by Lea Aring

Community involvement

Sarah Ford-Hutchinson says being part of the study has given her hope: “Doctors can only treat the symptoms of ME/CFS but patients like me desperately want a cure. Being part of DecodeME strengthens my hope – if researchers can understand what causes it, treatment is more likely.”

What can colleagues do to help those with ME? Sarah says: “Just listening with compassion and trying to understand what you’re going through can be really helpful. I still constantly worry that colleagues think less of me when I take longer to complete work or have more sick days than I used to. But that has not been the case; my colleagues have been so supportive in understanding the impact my illness has on my work and make adjustments on how we work together to accommodate them.” 

“Having a manager who is supportive has been fundamental to me being able to stay in work. With help from HR and Occupational Health, I now have a reasonable adjustment to work mainly from home, meaning I can give my limited energy to work, rather than commuting. I also occasionally work part-time hours too when I’m going through a bad flare-up in symptoms.

“I now accept that my illness is a disability. Disclosing this in work and agreeing on reasonable adjustments has not only kept me working but taken a huge mental and emotional weight off my mind.”

New Staff Disability Advice Service

Those with ME and other impairments and disabilities can also reach out to the University’s new Staff Disability Advice Service (SDAS) which aims to provide confidential support and guidance to colleagues as part of the University’s commitment to creating equal opportunities across its workforce, promoting a culture where diversity is championed and disabled staff are supported to reach their full potential. 

Staff and their line managers can access the SDAS for information about potential reasonable adjustments in the workplace. The service can also help with applications to Access to Work, a government fund run by the Department for Work and Pensions to support disabled people in work. 

The University’s new Staff Disability Advice Service 

Photograph by Lea Aring

Get involved

In the next stage of the DecodeME study, the researchers hope to recruit further participants and analyse 25,000 DNA samples, including 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection to explore whether there is a genetic component to ME/CFS. To aid their efforts, the study team from the University of Edinburgh are calling on more people with a diagnosis of ME/CFS from a health professional, aged 16 and over and based in the UK to take part in the study.

Volunteers who wish to take part in DecodeME and meet its criteria will be mailed a collection kit and asked to send back a saliva sample. This can all be done from home. The final deadline for taking part is 15 November at 5pm.

Join the DecodeME study