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As usual, promoters of the psychosomatic paradigm don't seem to be able to maintain a position of equipoise on cause and effect when the evidence could suggest either, let alone put themselves in the shoes of someone who is sick and consider how that might affect their survey answers. Perhaps...

I haven't looked at the study yet, I don't know if this result is likely to be replicated. But, if it is true effect, then it's a cognitive exertion having an impact on cardiovascular parameters. Exercise is said to cause a short term reduction in HRV also, so is exposure to noise, exposure to...

That's an interesting assessment @rvallee. I think I attribute well-meant and sincere effort, complacency and naivety to both Hilda and the IAG as a collective. No doubt there were some individuals on the IAG who put a lot of effort and time into trying to make the review a success. But it...

Putrino's twitter thread: First, let me point out that there are antiviral programs and drugs out there that people have been trying to mixed effects: e.g. Truvada, Maraviroc, Maraviroc + Statins, Valtrex, Valtrex + Celebrex, Paxlovid and various combos of these. This is NOT medical advice or...

From the discussion A discussion of the 'dysregulation' concept - it's a very vague idea that is favoured by BACME and Gladwell in relation to ME/CFS:

Some of the 'FND' patients had only been ill for two weeks, over half were not able to mobilise themselves and had to use a wheelchair. I think if I was such a young person, having experienced that stress, along with the probing to find any childhood trauma, and then having been placed in a...

Cortisol results The mean cortisol level of the FND group was 10.5 at first measure and 10.3 at second measure. The mean cortisol level of the control group was 6.2 on the first measure and 13.7 at the second measure. It's not that the young people with FND were not producing cortisol at...

The paper is now open access. Difference in collection environment That is a major difference between the groups, collection at home (controls) and collection during the residential programme (FND group). It seems possible that the FND young people's natural sleep/awakening processes may have...

@Snow Leopard's noted that any release of extracellular ATP is probably acting on tissues super locally, so could be very hard to identify in blood tests.

I'm not sure if cognitive exertion causes PEM. Working for hours on something, especially to meet a deadline, often does cause PEM, but it could be the long periods of being upright and the tension in the body. Re what a common mechanism could be if both cognitive exertion and physical...

Interesting that she can write this about the PA review:

Some notes/info related to the petition: We have 79 organisations supporting the campaign, from 25 countries. If any of you have connections with the organisations that had IAG representatives, please reach out to them and ask them to consider signing on to the campaign (#MEAction (US); EMEA...

It does sound as though Hilda tried hard in 2024 to get Cochrane to act properly, and she seems determined to continue to hold Cochrane to account.

Thought you might be interested in the cumulative number of signatures on the petition. Dave Tuller asked about numbers, reminding me that I haven't looked at the numbers lately. We got 1822 signatures since Cochrane announced the abandonment of the new review process, and nearly 300...

This is a Resources thread, dedicated to links to economic impact assessments of ME/CFS. Off-topic posts have been deleted. If people want to discuss whether economic impact assessments of health conditions are useful, please make a discussion thread.

The relationship between long COVID, labor productivity, and socioeconomic losses in Japan: A cohort study 2025 Masaki et al

Thanks @forestglip and @bicentennial. I forget, do we have any evidence of higher levels of extracellular ATP in people with ME/CFS? Thanks also Kitty, primed by your comments about the nice woman in the intro, I found that section hilariously entertaining but didn't last much longer than that.

What is TOC? I have issues with hanging out washing, except on my better days. It's weirdly exhausting and there is definitely a 'strange heaviness'.

The finding in this paper was specifically SULT1A1, with the 'one' there, not 'two'. But yes, thanks @mariovitali.

Do members of the Norwegian regional ME/CFS groups pay the membership fee to those groups, that then contribute some of it to the national group? Or do people need to pay two separate membership fees?