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The difficulty of course is that "fatigue" can be caused by all sorts of things, including lung and heart tissue damage. This looks like a mostly older cohort, mostly male. So, possibly a lot of what we are seeing is the impact of a severe infection.

I'm not completely sure, but I think that if you ask the cohort to do repeated muscle contractions at a set percentage of their peak force, the average number of muscle contractions that they can make will be less than that of matched healthy controls. i.e. more muscle fatiguability Also, and...

You say "sleep disturbances". The CCC requires: 'Sleep disturbances' isn't really 'unrefreshing sleep'. Plenty of people with ME/CFS won't have recently had sleep quantity or sleep rhythm disturbances at the particular time you ask them about their symptoms. I have a bit of a problem with...

I think that is almost certainly unlikely to be true. When clinicians have done extensive and intensive investigations, they find that a significant percentage of people have other medical conditions e.g. the NIH intramural study. I think it's an important point for medical researchers to be...

Thank you @Nightsong, what you say makes sense. I suppose the writers may have been trying to convey a sense of 'don't leave it too late' in response to a feeling that that is what is happening, when what is needed is simply good clinical care applied without discrimination and with empathy.

I think there's been an undercurrent in a lot of the literature of, 'how can we tweak our FND offering so that the patients trust us and are grateful rather than telling us exactly where we can shove our functional diagnosis?'. And part of that has been understanding what patients are feeling.

Sounds like a good suggestion to separate out recommendations for more severely affected people. I don't understand your comment on this; can you explain a bit more? It may prevent some doctors taking the advice seriously, but is it not a reasonable recommendation? (Genuine question, I don't...

:D Well, actually, I was telling you that the total evidence base that I have seen for psilocybin, which includes this case report, taken together with the report from someone I know well adds up to 'not convincing'. I don't think psilocybin stacks up for depression either, although, whatever...

from a post elsewhere, also about the Clinical Management of Covid-19: Living Guideline document a warning against GET

I've mentioned elsewhere, I know of someone who has experimented with psilocybin, with no effect on their ME/CFS. I haven't seen anything convincing suggesting that psychedelics have any impact on ME/CFS.

Long-COVID symptoms improved after MDMA and psilocybin therapy: A case report Key Clinical Message Long-COVID syndrome lacks effective holistic treatment options. We present a case of a 41-year-old fully vaccinated female with Long-COVID syndrome who obtained significant symptomatic relief...

Does anyone know what WHO article this is?

Brian Hughes discusses this paper in a blog in 2022 Medical haste, COVID-19, and the mythology of “Medically Unexplained Symptoms”

The data is surely going to be messy, with many people in the control group having Covid-19, and many people in both groups having multiple infections. Compared to the control group without infection, people with COVID-19 who were not hospitalized during the acute phase of the disease were at...

More from the rare diseases link Disorders with similar symptoms

More information on Tango2 deficiency here: https://rarediseases.org/rare-diseases/tango2-related-metabolic-encephalopathy-and-arrhythmias/ Very interesting @Andy, thanks for posting. The metabolic crisis has aspects similar to PEM. I get dark brown urine.

Love those ideas, love that ME Poppins clip. And I can definitely hear John Oliver saying 'AT THE SAME TIME'. I reckon Brian Hughes has something of a similar vibe - looking through his blogs, there is good material there. See for example this blog...

Posts on gastroparesis and gastroptosis have been moved to the Symptom Discussion Thread Gastroparesis

May's update: PETITION UPDATE 30 May 2024 Thanks to our supporters Thank you to the more than 11,000 people who have supported the campaign. With the most recent additions from Zambia and Nepal, people from 76 countries have signed. Thank you also to the following organisations for adding...

Yes, that's not to say that researchers in NIH might come up with something useful, Hwang's work on WASF3 for example, which was, I think, a case of smart researchers following up on chance observations. And Vicky Whittemore appears to be battling on to bring some strategy and sense (and...