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@Andy, is it possible to set things up so that, by default, people's videos and mics are off? Otherwise, people watching in their jimjams might get some unfortunate exposure...

Sorry - Miranda retweeted it but I can't see how to pick that up.

I hadn't realised - Miranda Hart (2.3m followers!) tweeted about DecodeME last week: Edit - sorry, she retweeted this but I don't know how to show that!

As a leaflet, it's designed to be printed onto paper, so I think it's fair enough. But I wonder if there needs to be something designed for phones?

Just curious - why is that bad?

I don't think *any* patients in the UK will have been diagnosed by the CCC or IOM criteria. I think the NHS only uses the NICE criteria. I'm assuming that for DecodeME, you have to have had a diagnosis and then that we'll have to fill in some sort of CCC/IOM checklist to see if we're eligible...

Considering that the project hasn't had its formal launch yet - just its funding announcement - I think it's doing incredibly well. I feel confident about that 40,000! :)

Great that we're seeing new coverage even three days later in a major newspaper. I hope it drums up some more registrations!

But the writer strongly implies that those who object to GET are doing so solely because they haven't improved with it - rather than that those who object to GET have strong evidence based on PACE that it doesn't work, and that there is also pretty strong and widespread evidence of serious harm.

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: