DecodeME - UK ME/CFS DNA study underway

Firstly, amazing congratulations to all involved.

Did anybody else have an issue with the sign-up form on the DecodeME website? I filled it out and then it directed me to a different page with exactly the same form on... which I then filled out again, which seemed to work. Not sure if I've signed up more than one time... (Flagging this to @Andy, @Chris Ponting). Was using Firefox browser at the time.

 

Yes - we're Ground Zero for the insulting and ridiculous BPS horseshit.

 

Not four years, no, but a significant part of that time, yes. As you identify, the sooner we can receive samples from 20k participants, the sooner the analysis can be done and the sooner the results can be published.

Thanks for the report, I'll pass it on. Was this on a desktop (PC or Mac) or a mobile device (phone or tablet)?

 

How much of that four years was expected to be data collection, and how much analysis/reporting?

 

Wonderful that it's available for all to see! Yes, it was excellent

 

MRC announcement - https://mrc.ukri.org/news/browse/the-largest-genetic-study-into-myalgic-encephalomyelitis-in-the-uk/

 

If we can supply the Guardian with the press release text, we should be able to supply them with an appropriate photo to use!

 

I've been volunteering on the team and strongly endorse this - Sonya has worked incredibly hard and very skilfully. And I don’t think the study would’ve happened without her either.

Thanks, Sean

https://twitter.com/user/status/1275316968065728513


https://twitter.com/user/status/1275317387273867265

Love that "arm-in-arm with people with ME and charities" line.

 

Jazzed up version of my blog (thanks for the original link @Andy)


UK spends £3 million on the world’s biggest ME/CFS study
June 23, 2020 Simon McGrath

£3.2m of government money will fund DecodeME, the world’s biggest ME/CFS study, which aims to recruit 20,000 patients. It will analyse DNA differences between those with and without ME/CFS to help find its causes. Patients are at the heart of the study.​

Things are changing: ME/CFS gets the full-page treatment in a national paper tody.. The Times reports (paywall) that UK health-research funders are giving £3.2 million to create DecodeME, the world’s largest ME/CFS study. And patients will be at the heart of the project.

DecodeME will be a huge genetic study to find biological causes of the illness. The study needs 20,000 patients to join the study, and recruitment is due to start early next year in the UK. You can sign up now to show your interest and get updates.

The research team will look for small differences in DNA between people with ME/CFS and those without, aiming to find out what is going wrong in patients. That would be a huge advance in our knowledge.

Funders take a big step forward

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.

...

Yada yada. This is the best bit (and image):

Time to act
DecodeME is big, it’s biomedical and we all have the chance to be part of it. As Andy Devereux-Cooke, a co-investigator who has ME himself, said:


Andy Devereux-Cooke
"DecodeME offers us a fantastic chance to find the cause of this disease. But we will need a big effort from the community to find 20,000 participants. So please sign up now to receive updates and hear as soon as the study officially launches"

Sign up at DecodeME​

My involvement with DecodeME

 

It will be so interesting and useful to finally know which of the various hypotheses have a genetic basis.

We might also learn something about PEM. Is it more a maintenance process (in muscles, blood vessels, etc) gone wrong, or the brain processing signals badly, or some problem with energy production (maybe a problem with byproducts accumulating)?

Is the connective tissue disorder hypothesis correct?

 

I have to say the website looks very smart.

Is the MEbiomed website coming down now, or staying up?

 

To give rough figures, 75% of it has been set aside for recruitment and processing of samples, with the remainder being set-up at the start and then analysis and reporting at the end. So rapid recruitment could bring the time taken down dramatically.

 

Thanks.

I believe any visitors to that should be redirected to www.decodeme.org.uk - I've passed the report on that it currently doesn't.

 

I think we need to paste that idea inside our hats...

 

Thank you so much Simon M for volunteering your time and for all that you do!

 

I now feel guilty that I didn't also mention Simon by name - his work has been incredibly valuable to the study.

 

HALLELUJAH! what fantastic news.

Massive thanks to everyone who has worked so incredibly hard to get this going. I am tearing up

Wooohoooo