£3.2m of government money will fund DecodeME, the world’s biggest ME/CFS study, which aims to recruit 20,000 patients. It will analyse DNA differences between those with and without ME/CFS to help find its causes. Patients are at the heart of the study.

Things are changing: ME/CFS gets the full-page treatment in a national paper tody.. The Times reports (paywall) that UK health-research funders are giving £3.2 million to create DecodeME, the world’s largest ME/CFS study. And patients will be at the heart of the project.

DecodeME will be a huge genetic study to find biological causes of the illness. The study needs 20,000 patients to join the study, and recruitment is due to start early next year in the UK. You can sign up now to show your interest and get updates.

The research team will look for small differences in DNA between people with ME/CFS and those without, aiming to find out what is going wrong in patients. That would be a huge advance in our knowledge.

Funders take a big step forward

This is a landmark move from the UK government’s two health-research funders. The Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any. It looks as though both organisations are now serious about biomedical research for this disease.

Prof Fiona Watt, Executive Chair of the Medical Research Council, says

I would like to congratulate Prof Chris Ponting and his colleagues on this award. It signals the shared commitment of funders, researchers and patients to work together to gain new insights into ME/CFS.

Partnering with patients

DecodeME will be run by the ME/CFS Biomedical Partnership, a collaboration between scientists and those who live with the illness. Professor Chris Ponting leads the study working with the CureME team, which is headed up by Dr Luis Nacul. Ponting runs the Biomedical Genomics laboratory at the MRC Human Genetics Unit at Edinburgh University. CureME, which also runs the UK ME/CFS Biobank, is based at the London School of Hygiene and Tropical Medicine.

The scientists have put patients at the centre of the study. Two co-investigators live with ME/CFS and will work alongside the scientists. Andy Devereux-Cooke has the illness and helped found the Science for ME forum. Sonya Chowdhury cares for a son with ME/CFS and runs the charity Action for ME.

The partnership has set up a group of patients to advise it, and has consulted with people who have ME/CFS about how to improve the design of the study.

Better evidence for what causes ME/CFS

Scientists still don’t know for sure what causes ME/CFS, despite decades of research.

A big problem is knowing whether something that is different about ME/CFS patients is important. A difference that is responsible for the illness really matters. But many differences are simply an effect of the illness and so matter much less. And usually scientists can’t tell if the difference is cause or effect.

Genetic studies don’t have this problem because diseases (except cancer) don’t change people’s DNA. So if DNA differences are linked to ME/CFS, they must be playing a role in the illness.

Small differences, big clues – and big studies

If ME/CFS was the result of a single faulty gene, researchers would have found it by now. Instead, this new type of genetic study usually finds many DNA differences and scientists can map these to the genes they affect.

The effects of individual DNA differences are usually small, so researchers look for a cluster of them – something they have in common, such as protecting a certain type of immune cell, or controlling insulin levels. The biological processes that this cluster identifies are likely to play a key role in the illness.

These processes are then big clues that help researchers to home in on what causes the illness.

Although studies of this kind are quite new, they have already led to progress in several diseases, including Alzheimer’s and heart disease. And they have led to work on new drugs for rheumatoid arthritis and Type II diabetes.

But to reliably find these small differences, the studies need to be huge – and this one needs 20,000 people with ME/CFS to take part.

Easy to take part (UK initially)

Twenty thousand is a lot of patients for DecodeME to recruit, but it’s easy to take part. People with ME/CFS just have to fill in a questionnaire (online or on paper), and if they meet the study criteria, they are sent a tube for them to return with a saliva sample for DNA analysis.

Patients can do everything from home and so researchers hope that many severely affected people will take part. The study will aim to recruit everyone from the UK if possible, for several reasons including cost and simplicity. But the team will recruit people from other countries if they need to.

Time to act

DecodeME is big, it’s biomedical and we all have the chance to be part of it. As Andy Devereux-Cooke, a co-investigator who has ME himself, said:

DecodeME offers us a fantastic chance to find the cause of this disease. But we will need a big effort from the community to find 20,000 participants. So please sign up now to receive updates and hear as soon as the study officially launches.

Sign up at DecodeME

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Image credits: DecodeME logo, DecodeME; Ponting, University of Edinburgh; Nacul, LSHTM; Chowdhury, Action for ME; Devereux-Cooke, Devereux-Cooke; DNA/crowd, Canstock.