Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced today.

Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.

Now, thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.

The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part in the DecodeME study can register their interest now www.decodeme.org.uk

The Guardian, The Times (paywalled) and other news outlets are reporting this long overdue research funding boost.

ME/CFS affects an estimated 250,000 people in the UK, of all ages, and from all social and economic backgrounds. Post-exertional malaise, an adverse reaction to levels of exertion that many might consider trivial, is often considered to be the defining symptom – this can leave patients suffering from symptoms including extreme levels of fatigue, pain, inability to process information, and light and noise sensitivities. One in four people with ME/CFS are so severely affected they are house- and frequently bed-bound.

Andy Devereux-Cooke, one of the patients leading DecodeME, says:

“As someone living with ME/CFS, I’m well aware that the patient community has waited a long time for a study such as this one that has such a strong,genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”

Partnering with the MRC Human Genetics Unit at the University of Edinburgh and the London School of Hygiene and Tropical Medicine, it is being led by the ME/CFS Biomedical Partnership. This collaboration of researchers, people with ME/CFS, carers and advocates has grown out of the UK CFS/ME Research Collaborative (CMRC), established in 2013 by ProfStephen Holgate, MRC Clinical Professor of Immunopharmacology at the University of Southampton.

Principal Investigator Prof Chris Ponting, MRC Human Genetics Unit, University of Edinburgh, says:

“Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”

People with ME/CFS across the UK will be asked to volunteer to take part in DecodeME, which they can do from home, confirming they meet the selection criteria via a patient questionnaire already being used by the CureME Biobank. Participants will be mailed a collection kit and asked to send back a saliva or “spit-and-post” sample. These will be compared with samples from healthy controls.

Sonya Chowdhury, Chief Executive, Action for M.E., and Chair of the study Management Group, says:

“Simply put, we cannot do this without the determination and support of people with ME/CFS. Recruiting the 20,000 people we need is challenging – but absolutely achievable, by working in partnership with the CureME Biobank, charities, patient advocates, local support groups and others. People with ME/CFS can register their interest right now on the DecodeME website.”

The samples will enable the Partnership to undertake the world’s largest genome-wide association study (GWAS) of ME/CFS. Such studies have already helped to uncover the biological roots of many other complex diseases, including the identity of genes involved in Type II Diabetes, and the microglia (immune cells of the brain) that play a key role in Alzheimer’s Disease.

Co-Principal Investigator Dr Luis Nacul, CureME Biobank, London School of Hygieneand Tropical Medicine, says:

“Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved. This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease.”

Professor Fiona Watt, Executive Chair of the Medical Research Council, which is helping to fund DecodeME, said:

“This project is very significant in its scale and ambitions. It is one of the biggest studies into potential genetic connections to ME/CFS and 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.”

Dr Louise Wood, joint head of the National Institute for Health Research, said:

“I am pleased to see the research teams in Edinburgh and the London School of Hygiene & Tropical Medicine, and patient groups, come together to take forward this important project which seeks to shine a light on the causes of ME/CFS for the benefit of people living with this debilitating condition. Patient involvement – one of NIHR’s key values – has been embedded throughout, bringing huge relevance and value to the project.”