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What you're doing is great, but something needs doing at a national level to catch all the new patients.

People who don't have ME/CFS will be screened out at the questionnaire stage, so it's not a problem if they do sign up. In order to reach as many ME/CFS patients as we can, we need to put the wide call out. It's OK if other people are caught up in that first trawl.

Excellent letters. Thanks, @Robert 1973 .

Is anyone able to paste screenshots of the letters here?

Can anyone able to post please post a link to DecodeME and ask patients to sign up and everyone else to tell every patient they know about the study? I'm not a subscriber and am not being given the option to post. This needs to be our message over and over in the comments section of every...

I'd suggest posting a link to that video interview with Dr Nina Muirhead. I think that will kill that sort of argument stone dead.

What can be done by us, in terms of public statements and contacting the relevant professional bodies, to protect these post-Covid patients against GET, @Jonathan Edwards, @PhysiosforME? While the NICE guidelines are being reviewed and GET is under (hopefully unfavourable) review, it seems...

My understanding is that this - each of many mutations raising risk slightly - is the norm for many diseases and the idea is to identify the biological systems that those SNPs are grouped in, to home in on the cause. From the DecodeME FAQs: Findings from such [GWAS] studies have helped to...

More stories in The Times today (which Andy is posting on other threads). Whenever a story allow comments, we should be posting the link to the DecodeME website and inviting patients and supporters to sign up. The same for every story about ME/CFS in the media from now on! Can anyone post on...

If there is a comments section, I'd address the sane audience over the heads of the trolls and I'd paste the link for patients and supporters to sign up. We need to be doing that on every single ME/CFS news story from now on. Edit: I'm not able to do this as I'm not a Times subscriber - can anyone?

Cobbled together from that Facebook post:

This is excellent!

There's an MEpedia page on it here. It only mentions the MTHFR mutation, though.

You can see it in Andy's post that I linked to. Whipple's piece is the last one on that page.

From the FAQs page: CureME will apply its diagnostic algorithm (a very specific set of rules) to assess people according to well accepted diagnostic criteria: the Institute of Medicine 2015 or the 2003 Canadian Consensus criteria, but not the Oxford or NICE criteria. Post-exertional malaise...

Sorry - I edited the link and it should be OK now.

No pressure, no pressure....

Thank you, Chris! This has been a brilliant day for all of us. I've waited more than 30 years for serious, large-scale science like this. I can't thank you and your team enough for everything you've done and are going to do.

Oops! Thanks - I've edited that link.

Scroll to the bottom of Andy's post to see it full-size. (Link edited - thanks, @lunarainbows!)