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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...

Crossposted with the 2 posts above this one. Hi @Friendswithme, welcome to the forum. I see this a little differently. We have a forum rule that does not allow speculation about any individuals' health, but does allow careful discussion about information that is in the public domain. In the...

Do you mean clinics are being run that 'treat' all these conditions together as if they are the same?

It's shocking how much credence is given to unevidenced theories like this just because the authors want it to be true. The power of eminence and prejudice is shocking. I think this also demonstrates the dangeŕs of conflating ME/CFS with other fatiguing conditions.

Thanks to George Monbiot for picking this up. I hope he gets a good response.

So disheartening. I immediately think this needs a response. Is there any point?

I did wonder whether the LP/OptimumHealth people use the rice-goes-bad-if-you-insult-it story as a gullibility test to see whether potential clients are suitably gullible to believe the 'science' they are telling their clients to justify their methods.

I get motion sick as a passenger, not as driver. I think that's a common experience unrelated to ME/CFS.

I'm wondering why you left out ibuprofen.

I had a 10 minute ambulance ride recently. Every bump made me tense to hold my body in place. If I'd had to endure several hours I'm sure it would have induced severe muscle pain and PEM. Car journeys are a very difficult too, apart from motion sickness, there's also a lot of muscle tensing...