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The amazing DecodeME ME/CFS DNA project that just got funded, is holding a webinar on 6 July. Details to be announced later, presumably - this info is from emails that went out to people who registered for updates about the study.

By government - the MRC and NIHR are government-funded.

@Andy - I still haven't received an email but gather from someone who has that it says that the study’s Management Team will host a Q&A webinar at 4pm on Monday 6 July, which is great news. I just tried to add it to the S4ME calendar but I've forgotten how to do it. Can you help?

Maybe one for the FAQs, @Andy - is it likely that post-corona patients are likely to get a 'post-coranavirus sydrome' diagnosis rather than an ME/CFS one from their clinicians and so be ineligible even though they probably should be? (Edit: the FAQs currently say that you have to have an ME or...

Numbers going up!

I'm confused. Surely the point of getting those early sign-ups was so that they'd be permanently on the mailing database (unless they asked to be removed)? Why would they have to sign up a second time?

But doesn't that just mean that we'll get an email via signing up to the old site asking us to do that at a later date?

On the old mebiomed site, it said: 'We do not yet have funding in place and are temporarily using SurveyMonkey so that you can register your interest. Please note that you will not receive a confirmation email when you register.' If it's possible to send out a confirmation email via the new...

It would be interesting to get an update on how many new registrations the project gets today, @Andy. :)

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

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

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

https://meassociation.org.uk/2020/06/patients-scientists-and-advocates-celebrate-3-2m-funding-for-decodeme-the-largest-ever-me-cfs-dna-study/

@Andy, I'm signed up to this list but haven't received an email to tell me that the study has been funded. Is a message going out?

Apologies for a bit of cross-posting, but on the FAQs page of the DecodeME website, it says: How long will the GWAS study take to complete? In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner...

I could see the whole interview with Dr Nina Muirhead at the top of the article, despite the paywall: https://www.thetimes.co.uk/edition/...it-felt-like-id-been-in-a-car-crash-9nrk56fcb It's absolutely superb. Really couldn't be better. She's a terrific ambassador for us.

Actually, that's a major, major change - usually, they'd be the go-to people on any article about ME. That's a very significant observation, strategist! The proper scientists have arrived...

On the FAQs page of the DecodeME website, it says: How long will the GWAS study take to complete? In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released. So, @Andy...

In the media, photos of real people are used when real people have been interviewed. Otherwise, images from stock libraries are used, and they use models. So the difference is really a function of The Grauniad not interviewing any patients. (Which is not inconsistent of presenting a fantasy...

YEEEEESSSSSSS!!! 'Game-changer' has become a cliche but this really is one. We've been waiting decades for serious, fundamental research like this, that has the potential to change everything. Not only that, but the fact that the MRC and NIHR are funding it to the tune of £3.2m is surely a...