DeCode ME/CFS

Fire

The world's biggest study on ME/CFS has just begun, with major funding from many quarters. If you know of any UK residents over 16 that have diagnosed ME, have had it in the past, or have had an officially diagnosed form of Long Covid, participation in the study may be of interest. The project is being led by the University of Edinburgh and is specifically designed to find the role of genetics in the disease. 15 000 people have already signed up and more are needed to get data at scale.

It's the first major study designed to shine light on the devasting condition.

https://www.decodeme.org.uk/?utm_source=sendinblue&utm_campaign=Follow_up_invite_email&utm_medium=email

https://www.ed.ac.uk/mrc-human-genetics-unit/news-and-events/latest-news/decodeme-study-protocol-published-template-me

https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-62876472

https://www.frontiersin.org/articles/10.3389/fimmu.2021.656797/full

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Ergates

Thanks Fire. I’ve forwarded this on to a friend who is a sufferer.

Fire

This DNA study has had a new tranche of funding and is still looking for participants. If you have a ME/CFS or Long Covid diagnosis or know someone who has please do investigate.

It's the first big study ever done - proper funding, global interest. Long term.

Fire

The DeCode ME (UK) is closing in the next few weeks and they need more people with ME diagnosis to join in with the project so that the data set will be as robust as possible. If you know of people suffering with ME/CFS/Long Covid, please let them know that they are very invited to participate. Over 20 000 people in the Uk have got involved so far with this study (since 2020) and a final cohort is needed.

https://www.decodeme.org.uk/?utm_source=sendinblue&utm_campaign=Follow_up_invite_email&utm_medium=email

muckyhandsmike

my daughter has suffered with me since being a teenager. I think she has already participated but I will check, thank you fire.

Fire

I'm sorry to hear that Mike.  It can be devasting.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/

Chelonie

I participated in this! I've never been so excited to drool before.  

Fire

Lol. 

As a participant we get regular webinar updates from the DNA study team - comms are a big part of the set up. They take this and follow up seriously and they are good at it (participant relations, they call it). Uni of Edinburgh and leading.  The project is closing soon but hopefully many more studies will spring from it - not least how to address the issues they find in the cohort they identify. Of course, the results will throw up more questions than they answer - but that is kind of the point.