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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:

I’ve not managed to keep up with this thread or much else recently due to moving house, so apologies if this has already been posted, but I see that Layla Moran has secured a House of Commons debate on Long Covid on 7 January. I’m wondering if those of us who live in the UK should be writing...

Yes, I asked them to change mutation to variant, but apparently too late. I wasn’t sure about saying evolve. Is it not correct to say that variants evolve?

That wasn’t the word I was thinking of. I used dangerous to cover any ways in which a new variant could pose a greater threat to public health.

My letter in today’s Observer: https://www.theguardian.com/commentisfree/2020/dec/27/letters-england-latest-coronavirus-lockdown-was-way-too-late After I submitted the letter I wrote back to request that a word be changed, but it wasn’t. Bonus point to anyone who guesses what the word was...

I just wanted to apologise that I’ve not managed to contribute more to this process and to thank everyone who is working so hard on it – especially the committee. It is very reassuring to know that such competent and knowledgeable people are putting this together. Also a reminder that anyone...