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Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs) K L Haywood 1, S M Collin, E Crawley Abstract Chronic Fatigue Syndrome or Myalgic...

The moderation team has decided to not split posts off from the thread. We think the information about David's approach to his ME/CFS work is not off-topic for the thread. The small number of posts that go beyond that are difficult to separate. We have existing threads for discussing the...

I ticked the 'just put off - don't feel like having it' box. I haven't drunk much alcohol since I became ill. I don't think it makes me more ill, but I haven't really monitored that well. I will have to experiment! In a 'correlation is not causation' consideration, at least for those people...

I may have been beaten down into accepting crumbs, almost certainly I have... But in my country a pamphlet acknowledging Long Covid sent out to support schools would be progress*. In my country, people are wringing their hands over the poor attendance rates** in schools and, while of course...

Yes. In this case though, we have a report of the issue and we are looking at options. So, no need to report this one.

I think it was fine for Charles Shepherd to provide advice to Paul Garner at that time, and also for the MEA to profile him. Garner has roles that would have made him a very useful ally, and clearly Garner was quite open to providing material. Perhaps someone who knows Garner well might have...

It is a really compelling listen, thanks @Adam pwme for making it available and to the people who participated. Nicky Campbell, the interviewer, was extremely good. He managed to get across that LC is debilitating, horrendous, and common. And that we don't know much yet. Wants to focus on the...

On the video: Jarred presents charts for three people with GWI, where their CRP tracks with fatigue. It would be nice to see a proper study on that. He says that 66% of the people with GWI that he tested (a big sample, from the chart) had elevated CRP. He says that he will report the ME/CFS...

Does anyone know if the recording is up yet? I haven't been able to find it.

Maybe so, but I think when the topic is assisted nutrition in ME/CFS, the risk of people seeing that connotation is there, is worth avoiding and can be easily avoided. I mean, we are talking about a syndrome that is seen to sit in the FND category, for which a published diagnostic indicator was...

Sounds super. Do you have an app for that?

Very nice, thank you Jonathan. Some comments: I still don't understand how the ME/CFS acronym transcends the insights of people with ME/CFS. Second use of 'obscures', and I'm not sure that it is the best word to use here. You could just say ''Complex' tends to tacitly imply unspecified...

That seems an unhelpful thing to say. Of the people who responded to their survey, 58% were female. So, if there was no sex bias in who gets Long Covid, we would expect 58% of the people with Long Covid to be female. Instead it was 60%. Throw in a possible sex bias skewed to females being...

759,149 respondents, so approximately a third replied to the survey. But, it was a general survey, so the bias will be less related to the presence or absence of Long Covid. There is probably still a bias in who bothered to reply. There were more females than males who replied (females...

Just as an aside, I started reading 'Whole-body visualisation' and braced myself for what was to come. I wonder if you can get PTSD from constant exposure to BPS research?

Paris/Amsterdam study I think the importance of the study is not in showing that the CoV-2 antigens persist (as that has been done before), but that these researchers have a way of tracking their presence non-invasively in living animals. It might also be in demonstrating again that the...

A number of the case reports in Ramsay's 1957 document note persistent one-sided weakness. But, whether there were strokes or not is not important now. I think we agree that we can't really know what was going on in the cases that Ramsay grouped together from the snippets of information that...