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Working together seems like a good way to achieve more political power, which we desperately need. But having one name for all of these conditions sounds like a recipe for disaster.

This paper is interesting because no one has tested pacing so soon after infection. We know it doesn't do much later on but it might work much better early on where there is still a good chance of recovery.

The study does seem to show that pacing improves outcomes, but can't tell us by how much due to various methodological weaknesses. There also seems to be an issue with the adherence to pacing measure: Maybe the people who are not improving believe "I'm not improving and this shows I've been...

@Andy I don't think so. Pacing allows doing more if capacity improves.

"catalytic antibiotics" is a typo. It was antibodies. Very good. If I remember right he also said during the conference that they found variants in non-coding regions of the DNA that increased the risk of ME/CFS. Most genetics research into ME/CFS has presumably focused on the coding regions...

Yes this is exactly what I was thinking. The two Lifelines questions that are meant to capture PEM seem inadequate for the purpose of determining whether someone has PEM or not, therefore one cannot reliably determine whether the participant met CCC, ICC, IOM criteria...

The reason ICC, CCC and IOM criteria were specified is almost certainly to ensure that Fukuda criteria would not be used.

Wasn't there talk about aquaporins during the latest Invest in ME conference? They function to allow water to move in and out of cells.

Does it also work for people who are not overweight or obese?

The apparent dysregulation of blood volume and water in ME/CFS is interesting. However NFAT5 is probably just one of hundreds of genes that could have something to do with that. As far as I know, altered muscle regeneration has not yet been reported in ME/CFS (but since I'm going from memory...

I believe that for them in the end it's about money and jobs. CBT for "medically unexplained symptoms" seems like a big market and admitting that it doesn't work is too much of a loss. It seems more realistic for psychologists to shift towards providing supportive CBT (even if that might also...

PEM is so complex that it requires more than one question and some explanation. One aspect of PEM that might be least susceptible to misinterpretation is impaired next-day functioning. Feeling worse after activity is too vague and could be interpreted to include ordinary phenomena like delayed...

Also how PEM will be assessed. The idea is to find out if PEM will be assessed with some vague question like "Do you get more fatigued after activities?" or something more specific. We really need a good PEM questionnaire. The DePaul questionnaire is not good in my opinion and there isn't...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8292242/ I wanted to ask @Snow Leopard if the processes described here seem like they might fit with a ME/CFS disease model. In particular I'm interested in reduced DOCK1 and ARPC3 activity due to a genetic cause.

PACE is one of the best examples they could find? That says volumes.

I thought you're not supposed to use statistical averages to draw conclusions about individuals. And there are thousands of rare diseases. They're only rare individually.

It seems likely that these ideas and false statistics have influenced how mothers with children with ME are treated. A few weeks ago I saw a comment by a doctor who said that having two children with ME is likely a sign of Munchausens By Proxy.

I would have thought that autonomic dysfunction would be more pronounced in ME/CFS because orthostatic intolerance is a diagnostic criterion for ME/CFS but not MDD.

A good way to explain how absurd these attempts to treat unexpained somtic symptoms really are is this: If I told you that I have a drug that can treat almost every unexplained disease, you would not believe it and instead think that there is something wrong with my judgement. But if someone...

A paper on the gene variants in the mother and children: https://academic.oup.com/europace/article/23/3/441/5983835?login=false