Free Leaflet: DecodeME – The Largest Ever Genetics Study!

July 1, 2020

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

This is a free 2-page leaflet about an exciting new study that we hope will be shared with anyone who has ME/CFS and might be interested in taking part.

Please register your interest now by visiting the DecodeME website. The study will begin in September with recruitment from March 2021.

Full details about the study's launch, with comment from all involved, are available in the press release from 23rd June 2020.

Please note:
Members of the ME Association will receive this free leaflet with the July issue of ME Essential magazine.

£3.2m Funding for DecodeME, the Largest Ever Genetics Study!

Leaflet Extract:

Funding for the world’s largest genetic study into myalgic encephalomyelitis (M.E.), led by a partnership of patients and scientists, was announced on 23rd June.

Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of M.E., 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.

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.

“Having been involved in the planning and development of the DecodeME study we are delighted to learn that the Medical Research Council and the National Institute for Health Research have agreed to provide a massive grant of over £3 million to ensure that this research can now commence.

“This type of ‘genetic fingerprint’ study is already providing important information about the cause of some types of eye disease, Parkinson’s disease and prostate cancer.

“Finding the genetic fingerprints for ME/CFS could therefore provide us with vital clues to help with diagnosis, treatment and even the prevention of ME/CFS.

“Active patient involvement is right at the centre of the Decode ME study and the CURE ME team at M.E. Biobank, which is funded by the ME Association Ramsay Research Fund, will be playing a central role in patient recruitment.

“So we hope that people will now sign up and register their willingness to take part in this exciting new biomedical research project.”

Dr Charles Shepherd
Hon. Medical Adviser, ME Association.

The ME Association

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