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We haven't a clue what's wrong with you but we confidently state that the cause is a mix of biological, social and psychological factors and we know how to treat you. Bah humbug, that's not science.

The abstract is an excellent distillation of your key points. I'm a bit puzzled by the bit underlined: a symptom-based syndrome characterized by post-exertional malaise, orthostatic intolerance, and an unpredictable, fluctuating time course a fluctuating time course of what?

Since I can't read the article, I don't know whether it's about encouraging parents to listen carefully their kids, ensure the kids know they are believed and to be supportive and adapt lifestyles to enable the child to cope. Or is it about telling parents to deny or ignore the symptoms, and...

That's a useless abstract. It says nothing about what the intervention actually is, nor about what changed.

Some posts have been copied to The UK Covid Inquiry

I listened to the Radio 4 health program from this week. They advised against experimenting with mouth taping on grounds of problems with choking on saliva or vomit.

Sadly it seems anyone is an expert to the BBC if they call themselves an expert and make a lot of noise about it. On the surface his credentials can seem impressive: His name is attached to various articles about ME/CFS and Long Covid published in research journals; he's part of the self...

There is a copy of the letter on the #ThereForME website: https://www.thereforme.uk/p/thereforme-letter-to-the-health-and

So do I. As far as I know we haven't seen any evidence beyond a few anecdotes, some positive, some negative. Hardly the basis for BHC to be raising spinal surgery as having any relevance to ME/CFS. I had a pretty good impression of BHC until this.

If they used the word fatigue in a questionnaire with healthy people, and asked the participants to think back to a time when they were fatigued, and what their thoughts were at the time, I can imagine many healthy people will think of tiredness due to lack of sleep, perhaps during exam periods...

I think you're right, @dave30th, to steer clear of the biomedical hypotheses in your work. I don't think anyone here has said any of the current hypotheses such as microclots, MCAS, viral persistence etc are definitely wrong, I see it more as a 'question everything until there's strong and...

Surely it should say, only considered when there are clear signs and symptoms of CCI or tethered cord. Nothing to do with ME/CFS diagnosis.

What on earth is he on about? Edit: I googled it. Apparently it's about fatigue in depression, not ME/CFS Allostatic Self-efficacy: A Metacognitive Theory of Dyshomeostasis-Induced Fatigue and Depression

That is this forum. The committee was invited to sign, we read the letter and agreed to support it. We couldn't put it to a forum vote as we sometimes do, as it was both confidential until today, and we were given very short notice.

The National Geographic article is paywalled. Can anyone find what evidence they are basing their article on. Presumably they are citing some research, not just quoting Jaime Seltzer.

Nigel Speight and Helen Baxter would be good sources of information on people who had NG or PEG and were able to come off them. Case 5 in this article has had 2 periods on NG tube feeding and was able to come off it. https://www.mdpi.com/2227-9032/9/4/459 Case A in this article had tube...

Something that I think is worth including in this and/or your other article about feeding problems is that in some cases pwME rely on enteral/parenteral feeding for a time, and gradually improve and become able to eat and drink again. The impression given from highlighting Maeve and Whitney's...

I think it's excellent, thank you. How can we get relevant people to read it?

They probably are. Garner has published yet again criticising the NICE guideline, and supported by PACE authors and Wessely.

It's a difficult dilemma especially when some guidelines turn out to be harmful, as the 2007 guideline for ME/CFS was, since it recommended the GET/CBT approach. Now we want the 2021 guideline to be followed, and not the BACME stuff that contradicts it. Also there are some bits of the NICE...