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Would definitely need some thought about how to best to organise it. Would be great if the mods/committee could discuss. After reading comments above I’m wondering if we could have a sub-forum which has a main thread where people are asked to share their experience within a word limit. I think...

I hope and suspect that this (if true) has been coming from anti-lockdown idiots but it is unfortunate that she doesn’t specify, having very publicly, and in my view falsely, accused Peter (not Denton) White of malicious representation of her views on ME/CFS and blocked him:

Reading quotes from ME patients in George Monbiot’s article on ME/CFS and long covid in the Guardian gave me an idea: could S4ME set up a thread for people with ME/CFS (and maybe their friends, family and carers too) to post testimonies of their experiences of living with ME/CFS? I know that...

I’ve not managed to read all the comments since my last post yet, so apologies if I’m misunderstanding the point, but I think it’s important to remember the last paragraph and sentence of George’s article (my bold): “We need massive research programmes into both long Covid and ME/CFS, coupled...

Really good, Caroline. Thanks. I loved this: ‘‘But was PACE effectively a “show trial”?’ Not heard that phrase before. Perfect analogy.

I think the public and therefore the government would care a great deal more if doctors and other medical professionals had been speaking out about ME/CFS for the past 30 years or more. I come from a medical family and have great respect for many individual doctors (including you and the handful...

Merged thread George has absolutely nailed it: https://www.theguardian.com/commentisfree/2021/jan/21/were-about-to-see-a-wave-of-long-covid-when-will-ministers-take-it-seriously I can’t remember a comment article on ME/CFS that covers so much and gets so much right. Almost every line is worth...

Not sure if this addendum has been posted: For those of you not aware, Peter White (not PDW) also had a good letter on long covid and ME in Nature recently: https://www.nature.com/articles/d41586-020-03136-0

I was meaning to post something about this in the LC and ME/CFS guideline feedback threads but wasn’t well enough. I often wonder to what extent self-limiting PVF or PVFS from which people eventually recover overlaps with ME/CFS. Are they different degrees of the same thing? To what extent does...

Just a reminder of some past Tweets: The following Tweets were deleted by TG and CG: And a reminder of TG’s the BMJ article on patient-led research which singles out ME/CFS as a negative exception (my bold...

Some valid criticism of Amy’s defence of doctors with LC wanting to separate themselves from ME/CFS but I think she is unquestionably on our side. There have been many responses to her tweet. While others have responded to criticism with blocking and accusations of malice and harassment, she has...

Thanks. I’ve been through the Guideline and I can’t find it. What page is it on? https://www.nice.org.uk/guidance/ng188/resources/covid19-rapid-guideline-managing-the-longterm-effects-of-covid19-pdf-66142028400325

I’ve asked TG several polite questions on Twitter about her views on ME/CFS research and treatment since she became involved with LC. She’s not replied to any of them. As far as I’m aware there isn’t a single reference to ME/CFS let alone the ME/CFS Guideline in Long Covid Guideline. (Please...

Yes, see tweet above. I also sent this: (Link for anyone who can’t access Twitter: https://www.dropbox.com/s/jroffc18kizqzzn/fiona_fox_ME_RCP_with_links.pdf?dl=0) I’ve also emailed him about these issues. He will have so much info now the challenge will be deciding what to include in a 900...

Update:

Links to posts linking to articles/videos: Jan 2021 article in the Guardian Apr 2021 article in the Guardian Jul 2021 interview video ************************ Not sure if these have been posted in other threads but I think they are significant so I’m posting them in their own thread. For...

In case anyone can’t access the images of letter in the above tweet here it is in full: