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Thanks to AfME for promoting the petition again - there's been a noticeable uptick in signature numbers from the UK today.

Just looking at the something in the blood experiment: 5a and b. Rates of oxygen consumption in a Seahorse analysis - black is healthy controls; red is ME/CFS 5c and d. Rates of lactate production in a Seahorse analysis 5e Calculated descriptors of mitochondrial respiration based on...

There's also this thread about a 2020 OMF announcement, it has some good commentary about Mestinon. OMF to launch clinical trials on Mestinon & Kynurenine, post-COVID19 study If these studies have been completed, perhaps someone can post links on the thread.

Another thought, given the apparent high variability in CPET results depending on prior exertion, we could expect that there would be a lot of noise in a study that looked at the change in results from one CPET at time 'x' and another CPET at time 'x + approx two years'. You would need to be...

We have a thread discussing the utility of LDN here: Experience with LDN? We have a thread discussing the utility of mestinon here: Mestinon There is also this very recent thread Exercise capacity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) treated with long-term...

It's like AI software had a go at writing about Long Covid - some things right, some things wrong, some conjecture presented as fact, an uncritical reflection of 'what people are saying'. I guess it is hard to write about Long Covid well because so many things are still vague. I see that the...

As much as I'd love mestinon to be an answer, and as much as I want Systrom to keep investigating, and as much as I think a problem related to acetylcholine is plausible, the result isn't overwhelming. The sample size is small: 37 in the treatment group, 16 in the control group The effects are...

https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-1 This paragraph suggests that you are right @Peter Trewhitt, that the ME/CFS rep positions do represent organisations, and...

We have had it confirmed that Hilda remains part of the IAG. I agree we shouldn't speculate, but I also think the full list should be in the public domain. It was made clear that people were appointed as individuals, and not representatives of any organisations they were associated with...

It's a bit like having a trial of gay conversion therapy and saying 'Due to our selection procedure we may have included patients who did not always expect a conversion therapy approach'. Quite apart from whether such a trial would be ethical, it is clearly wrong for mentally competent people to...

Is the full list of IAG members in the public domain? I know we got information about the initial appointments, but there were at least a couple of appointments later.

If patients were included who did not expect a psychosomatic approach then it seems to me that the principles of Free Prior Informed Consent were not followed. This is because the treatment is fundamentally a psychosomatic therapy (the authors acknowledge that in the title), with all the...

Worth noting the patients with later variants were seen earlier (median 4 months). That might have affected severity ratings and recovery rates. Also, most of the patients were infected during the 'wild-type' period (556/804).

Post COVID Clinic at Aarhus University Hospital (AUH) There are a lot of typos that make this paper rather difficult to read. e.g. (Ref 9 says "The available data suggest that the infection with the Omicron variant results in fewer long-COVID symptoms compared to previous variants" and...

The reported persisting symptoms seem quite odd - the percentages reporting each were mostly much lower than I'm used to seeing in Long Covid cohorts. 49.7% reported fatigue; 33.1% reported breathlessness; 20.1% reported joint pain. 41% reported 'anxiety and depression'; loss of taste and smell...

The control cohort is also post-infection. The PCC cohort here has fewer people over 65 (18%) than the control cohort (25%). Also 59% female versus only 46% female in the control cohort Still a high hospitalisation rate compared to the controls (58% versus 34%), although it is claimed that 55%...

Indeed. That statement is coming from a woman who invented a scale asking people whether a symptom now is worse or better than what it was when they were well. If it really is impossible to know whether sleep problems pre-dated infection, then it is also impossible to know, simply by asking...

I guess there are lots of reasons. It's increasingly hard to see the same GP when making appointments - practices tend to be larger with a big roster of doctors and an even bigger number of patients. Without that continuity of care, it's easier for doctors to dehumanise their patients...

Perhaps here is another Freudian slip, from the 'Added value of this study' summary: Rather than 'comprising', this study 'compromises' both patients and GPs 'Compromising' definitions: (of information or a situation) revealing an embarrassing or incriminating secret about someone. e.g...