People with Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) have been "Conflated" with "Misdiagnosed" Chronic Fatigue Syndromes and have been "Misunderstood", "Maligned" and "Marginalised" for decades: CFS Research Criterias Researcher; offers advice to those struggling with M.E.
One of the most misunderstood illnesses in modern medicine.
This is how many researchers now view "Chronic Fatigue Syndrome".
Enteroviral Encephalomyelitis, also known as Myalgic Encephalomyelitis or simply M.E., is characterised by physical exhaustion, cognitive difficulties, muscle fatigue, motor weakness and pain - but the symptoms are often dismissed as pure imagination.
And that is a serious mistake, according to geneticist Chris Ponting from the University of Edinburgh, who has just conducted a major study on CFS
"It is not a rare disease, and it is severely debilitating," Ponting tells Science Illustrated.
Together with his colleagues, he has found the biological cause of the illness, and he is now sharing his key insights - as well as surprising advice for those suffering from constant fatigue.
WHO'S WHO: CHRIS PONTING
Title: Professor Chris Ponting from the University of Edinburgh is the leader of the British DecodeCFS project, which focuses on CFS.
Research: His research focuses on the genetic mechanisms underlying CFS, with a particular focus on how DNA variations affect the nervous system, the immune system, and the risk of chronic illness. In 2025, he published a major study, which revealed the genetic cause of CFS.
"M.E. has long been stigmatised. People with M.E. often look healthy, but describe it as having poison flowing through their bodies. Because it is not visible, they have often been met with scepticism."
"What we have done is to present an objective scientific result showing that there is an average genetic difference between people with CFS and others. This has changed perceptions, and now I believe that most people understand and accept the symptoms as real."
What has surprised you?
The most surprising thing for a researcher is always when you find something. We design experiments in such a way that if there is nothing to be found, we will not find anything. And yet we found eight genetic signals that no one observed before."
"When we examined the areas more closely, we saw two things: Firstly, the genes in these areas are more active in the nervous system than one would expect by chance. Secondly, some of the areas contain genes already known to play a role in the immune system. This means we now have genetic evidence that biological mechanisms are involved in CFS."
Is CFS a mental illness?
"One of the great strengths of genetics is that we can ask questions without bias. One of the questions we asked was whether the genetic markers for CFS overlap with those for other diseases. We found one overlap – with chronic pain. But we found no overlap with diseases such as diabetes or mental health conditions such as depression or schizophrenia."
"Based on the current evidence, we can say that CFS appears to be a distinct disease – with its own genetic profile. We have not seen any genetic overlap with mental health conditions. That may change, but for now, there is no evidence of a genetic link with mental health conditions."
What is your advice for people with M.E.?
"I am incredibly lucky not to have M.E., so I do not feel qualified to give personal advice. But I can share what I have been told. After an infection, it is important to let your body recover. Do not push yourself. Do not start exercising too soon. Be cautious about advice on graded exercise."
"Exercise is good for most illnesses, but for M.E. - particularly early on - research shows that it can be harmful. If a family member developed M.E., I would say: ‘Now you need to rest.’"
Can you alleviate your symptoms?
"M.E. varies greatly from person to person. Some experience a gradual improvement, but they are in the minority. Others have fluctuating symptoms, and for some, the condition gradually worsens. I am not a doctor and cannot give specific advice, but people must be treated individually."
"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this."
What are your hopes for the future?
"In my view, the new study has shown us which path to follow. Previously, there were many possible paths. Now, genetics is pointing us in the right direction. I do not believe that CFS will ultimately turn out to be one single disease. Genetics supports the idea that there are many different factors."
"I do not want to raise false hopes, but I am convinced that we are on the right track, provided we get more researchers and far more funding."
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