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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...

As far as I understand, HIV activists were campaigning against the lack of investment in research etc. They were not accused of threatening or harassing people who were doing bad research. It was probably untrue when they made the accusation. But I think that the accusations themselves, which...

It doesn’t detract from his point but, having looked at this more closely, I think Brian has conflated outcomes with studies in his summary. Most the the studies report more than one outcome so there are many more outcomes than studies – although some of the outcomes listed in the tables in the...

This is very much the sort of nonsense that celebrity GP Phil Hammond (who works in one of Crawley’s CFS clinics) has been saying for a while. Where are the clinical trials that provide evidence for this approach? (And God help us if we waste another decade on a multimillion pound trial trying...

Zugszwang. I came across this word in an article about something else recently, although I can’t remember what it was – probably politics/covid. I wonder if we were reading the same article.

My rapid response to the BMJ article on the draft NICE Guideline has now been published on the BMJ website: https://www.bmj.com/content/371/bmj.m4356/rr-0 There is also a very good letter by @Andy who makes some excellent points and uses the opportunity to publicise DecodeME...

BBC radio Wales: The Long Tail – My Coronavirus Recovery: https://www.bbc.co.uk/sounds/play/m000p75r Blurb: “Sophie Wilson is one of the thousands of people in the UK with ‘Long Covid’. She meets fellow sufferers and medical professionals in Wales in the search for answers.” One of the Long...

I agree with this and have just completed the survey. My concern is that there doesn’t appear to be any way to verify who is completing the survey – you don’t even have to give your name or email address. This means that people who are neither ME patients nor carers who have a particular agenda...

According to http://dradamgaffney.com/:

Supporting Patients Living with Covid-19 Long Term Effects Wednesday 9th December 2020 Virtual Conference https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/covid-long-term-effects Brochure...

I’ve just read @Jonathan Edwards ’s expert testimony (https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3). It is absolutely brilliant, and a devastating critique of the CBT/GET models of ME/CFS. Some highlights and comments: This is an important point which Jo...