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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...

Report in Guardian: https://www.theguardian.com/society/2020/nov/10/fatigue-syndrome-exercise-therapy-loses-nice-recommendation : I hope someone might be persuaded to write a letter to the Editor about harms (ie evidence from surveys and the lack of a system for reporting harms)...

This is very sad news:

Thanks. I don’t want to be too critical of Paul Garner as he’s said some helpful things about ME/CFS and I know how hard it is coming to terms with a poorly understood chronic illness amid all the conflicting information and advice that he will have been given. When I was first unwell the...

I see that S4ME is not a linked organisation (http://forward-me.co.uk/linked-organisations-and-associates.html): I appreciate that most people here don’t have much spare capacity but would it be worth enquiring if S4ME could become a linked organisation with a nominated member invited to...