£3.2 million for new DecodeME DNA study


The ME/CFS Biomedical Partnership has received funding to begin the DecodeME DNA study. This will be a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should contribute to the understanding of the disease and ultimately find treatments.

They need 20,000 participants. Sign up now so that when the study launches in early 2021, they can start reaching out to potential participants and collecting samples immediately.

  • UK residents will be contacted first
  • You must be 16 or over to take part.

The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh in collaboration with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study is looking for differences in a person’s DNA that make them more likely (or less likely) to get ME/CFS, which should help pinpoint what causes the illness.

People with ME/CFS are at the heart of the study, with a patient and a carer as co-investigators alongside the scientists and a steering group of people with the illness, carers and charities. The work is funded by the Medical Research Council and the National Institute for Health Research.


Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome

Research aims to shine a light on condition that is believed to affect 250,000 people in UK

Times: Chronic fatigue syndrome: Search for genetic clues

British scientists are launching the world’s largest research project to unlock the genetic clues to a debilitating, poorly understood condition affecting 250,000 people in the UK and leaving many bedridden.

Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided

The new study may help to pin down the mechanism patients are looking for. Or it may be more false hope.

One thing seems likely, though. With many researchers suspecting that the condition is triggered by a strong viral infection, the ranks of the post-pandemic patient-activists could soon be swelling.

Times: Chronic Fatigue Syndrome. It felt like I’d been in a car-crash

Case studies of people with ME: Dr Nina Muirhead; Danny Chowdhury (son of AfME’s CE Sonya); Ali McNamara, a personal trainer

MRC: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched

Health rising: DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness

While GWAS studies can provide incredible insights, though, they tend to find gene variants that account for only a modest proportion of the heritability of complex traits. One reason for this is that it’s just very hard to identify some types of variants (common variants with very small effects, rare variants with small effects, ultra-rare variants) which, when they are all added up together, can significantly contribute to heritability.

We know that the environment – the infection or toxin you encountered, the food you ate, the mold you were exposed to, the stressful childhood events you encountered – often plays a significant role in the production of disease. Chronic diseases are usually the result of gene-environment interactions.

Those factors have resulted in GWAS studies, that, oddly enough, often do not explain much of the risk for a disease.  Instead of pointing to X gene causing a disease, they tend to uncover arrays of genes and biological pathways that merit further study; i.e. they’re more likely to point fingers rather than directly pinpoint causes.

One geneticist reported that: “What GWASs do is plant a flag in the landscape and say “There’s something interesting here”. After that “It takes a lot of painstaking follow-up work to determine what that interesting thing is”.

ME/CFS Research Review: UK spends £3 million on the world’s biggest ME/CFS study

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.

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