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Ah, a meta-analysis of Long COVID psychological studies. This XKCD comic seems... apposite:

This one? A. R. LLOYD, S. C. GANDEVIA, J. P. HALES, MUSCLE PERFORMANCE, VOLUNTARY ACTIVATION, TWITCH PROPERTIES AND PERCEIVED EFFORT IN NORMAL SUBJECTS AND PATIENTS WITH THE CHRONIC FATIGUE SYNDROME, Brain, Volume 114A, Issue 1, February 1991, Pages 85–98...

Thanks for posting your experience. For me it's been the other way around; I've suffered with migraines since early childhood. After a particularly severe migraine I do experience what's referred to in the literature as the "postdrome", but for me it's very different from PEM. Migraine...

Archive link, for anyone who doesn't have access: https://archive.is/20240808125157/https://www.thetimes.com/uk/healthcare/article/me-patient-death-young-woman-avoided-m7cjvgzr2

If my data had been scraped I think I'd make ethics complaints to the institutions of everyone involved pour decourager les autres. Something that does concern me is that if "research" like this is being carried out on unsuspecting Reddit support-group users then it could also be carried out...

After spending roughly two minutes skimming this paper: I think the study is unethical: although the Reddit forum is public no-one consented to the scraping of their health-related data. Reddit users are not representative of the population (probably younger and more technically literate...

This is what I'd personally like to see from a group of sympathetic politicians: * To push DHSC, NIHR, etc to make up for years of under-funding by ring-fencing a sum of money for biomedical & epidemiological research of very high quality and congruent with patient priorities. * To pressure...

Charles Shepherd letter in iNews regarding Long COVID:

Technology undoubtedly would have helped in some of the Royal Free cases which were a very mixed bag - if I recall correctly McE & B noted a case who subsequently died and was found to have lesions consistent with multiple sclerosis; that is the type of case that would have been picked up easily...

I don't think these BSG guidelines on the management of adult patients with severe chronic small intestinal dysmotility have been posted here before; again, I wonder if these are contributing to the over-caution we are seeing in some very severely affected ME/CFS patients...

Re Roy's testimony & sectioning: it was the social worker from the previous day's testimony, I think, who conflated the two things originally. Also he wasn't just an average gastroenterologist - his subspecialty was nutrition and IF and he also stated that he had an interest in gut-brain...

A thoughtful piece in the Herald telling the story from Melvin Ramsay to Edina Slayter-Engelsman to Maeve: "The Scottish doctor who tried to change attitudes to ME". Media coverage seems to have grown noticeably more sympathetic recently.

And the "novel methodology" is... using DevonAgent. I use this a lot; it's basically a tool that queries lots of different search engines and then aggregates the results. Wow, such novelty.

And another in the Daily Mail: https://www.dailymail.co.uk/news/article-13703203/Family-medic-tried-save-woman-27-died-debilitating-tells-inquest-NHS-staff-trying-care-not-doctors-lack-understanding.html

Some coverage in the Guardian ("GP who treated woman with severe ME tells inquest more funding is needed"): https://www.theguardian.com/society/article/2024/aug/02/gp-treated-woman-me-inquest-more-funding-maeve-boothby-oneill and in the Telegraph ("NHS staff treating woman with ME ‘didn’t...

A quest to manage CYP with ME/CFS and long covid under one MDT service – evaluation of a regional centre for CYP ME/CFS and long covid services Abstract Objectives Long Covid (LC) is a debilitating condition seen both in adults and CYP since COVID-19 pandemic.1 The similarities between LC and...

Blackburn also said that he believed that the Leeds unit had closed - without going back to my notes, from memory, I think he said that although it still had a website available online he had checked and thought that they were actually no longer admitting patients.

Now I have seen Dr W's letter not only was the advice not well founded but I am sorry to say it does not make much sense either. He suggested measuring her blood volume which wouldn't have been easy - radioisotope dilution could have be used but that would have exposed her to unnecessary...

Some media coverage of today's testimony - BBC: https://www.bbc.com/news/articles/cger8kdgdldo and ITV News: https://www.itv.com/news/westcountry/2024-08-01/mum-fears-daughters-me-death-could-too-easily-happen-to-someone-else

Some coverage of today's testimony in the Telegraph: https://www.telegraph.co.uk/news/2024/07/31/consultant-not-anything-medically-wrong-boothby-oneill/ And for anyone who's hitting the paywall...