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Well done Adam, the video looks great - very professional.

Before I forget: In the context of the CCI-discussion, Jonathan Edwards said he has been getting opinions from professionals in various specialities who are deeply involved in ME/CFS care - rheumatologists, paediatricians, neurologists etc. Apparently there was a complete consensus that (my...

Hope this is the version you're looking for (revised 2014): https://web.archive.org/web/20190823044938/https://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

Thanks for sharing. Would be good to have an overview of findings in psychology that are robust, cause it seems that a lot of what was in the textbooks shouldn't have been in there.

At the beginning, I didn't have a CFS diagnosis either and even when I got one, it was quite uncertain if this was the correct diagnosis. So I don't think this is about diagnostic labels. It could be that the school staff mistake ME/CFS for a mood disorder, but they might have just as well...

Good point forgot to take that into account. Had a look at the data from the Jason study and only 7 out of 42 (16.7%) of the ME/CFS patients were younger than 12. I don't think that a majority of the patients younger than 12 will have become so ill that they were never able to attend...

Right but not as fast as the graph shows, I assume. I suspect the prevalence doesn't keep increasing like this for people in their 20s and 30 (or does it?)

Thanks @Simon M for this interesting blog. A really good overview. One thing I hadn't thought about is how ME/CFS prevalence increases with age in children. It seems that this study found a clear trend for this. Together with the higher prevalence of ME/CFS in women compared to men, that might...

Sounds rather boring

Hilda Bastian has blogged about this (although she mostly seems to summarize and quote other people): https://blogs.plos.org/absolutely-maybe/2020/01/31/the-renewed-debate-about-blinding-clinical-trials/#.XjdIM7_EPcs.twitter

(haven't read the study yet) but why would response time variability have anything to do with fatigue if the response time itself isn't correlated. Sounds like a statistical correlation that doesn't mean much, to be honest.

Apparently the earnings of an episode of this Dutch Tv-quiz went to a mother with two daughters with ME/hEDS/POTS/CCI so they can have fusion surgery in Barcelona. I'm just posting this to indicate how widespread these stories are.

Yes. People living outside the EU (which now includes citizens of the United Kingdom) cannot sign the online version but they can sign the paper version. To sign the paper version: 1) Print out this template and fill in your contact information and signature: 2) Make a photograph of the...

How to sign the EU-petition on a request for funding for biomedical research on Myalgic Encephalomyelitis (No0204/2019) 1) Go to the EU website: https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/missinglink 2) Click register at the top right corner of...

I remember reading some of these qualitative studies (interviews with patients who had received CBT or GET). The participants were mostly patients who found the therapy helpful, but it was interesting that the things they found helpful were aspects that aren't central and sometimes even contrary...

The review (the first part of the thesis) of qualitative studies is actually not that bad. I suspect that if new therapists would read it, that they would better understand some of the problems with the current CBT-model in ME/CFS. Here's, for example, the author's conclusion:

You could circulate the paper version in your local ME/CFS support group or even among your friends and family, and then mail it when you have enough signatures. That's an effective method to can give you a lot of signatures. I think there were 3574 paper signatures from Germany and Austria...

So this study wanted to test wether health anxiety is a signfificant factor in ME/CFS, one that perhaps should get more attention in treatment. It is interesting that they say: So a focus on health anxiety is proposed as a way to increase the efficacy of CBT. Both the 14-item Short Health...

It does seem that some of these neurosurgeons are giving a dramatic prognosis to patients if they were to have no surgery. I can't really judge the accuracy of such claims, but really hope that these aren't overstatements.

My understanding is that people from outside the EU (which includes people from the UK after Brexit) can still sign the paper version of the petition and send in their support through the mail. @FMMM1