Sunday 22 October 2023

Decode M.E.

The Decode M.E. study is the world’s largest study into M.E. 25,000 DNA samples are being taken from people with M.E./CFS from around the UK with even more data from people being collected through questionnaires. The study has been expanded to now also include up to 5,000 DNA samples taken from those who have developed M.E./CFS after contracting the COVID-19 infection.

The Decode M.E. study is being led by Professor Chris Ponting who is part of the Medical Research Council, Human Genetics Unit based at the University of Edinburgh.

The aim of this research project is to find out if there are any genetic causes as to why people develop and become unwell with M.E. - Myalgic Encephalomyelitis also known as CFS - Chronic Fatigue Syndrome.

Funding has been secured for this largest ever study into M.E./CFS to see whether M.E. is partly genetic in nature and, if so, this will help researchers pinpoint what causes this illness. The study will also hopefully help scientists better understand M.E./CFS and ultimately help find treatments for the disease.

There is still time to participate in this study. The closing date for participation closes at 5pm on the 15th November. Click here to participate.

To find out more go to the Decode M.E. website and also check out their FAQ’s.


In time I look forward to the results of this study and seeing what comes of it. Questions such as did I have a genetic predisposition to developing M.E. and if so what triggered the genetic response to me getting M.E.? Also if M.E. is genetic where did it come from as no one in my family as far as I’m aware has M.E./CFS. I also hope that the research helps to develop some effective and targeted treatments specifically for those with M.E./CFS and the research with also help healthcare professionals better understand M.E. and it will generate in time better access to treatment and care as currently it’s a bit of a postcode lottery. I’ll also be interested to see if the researchers come up with correlations to other illnesses some people like myself develop.