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I've received a reply from ME Action, I will post it here below. "Dear Michiel, Thank you for your very thoughtful letter. #MEAction supports science and evidence-based medicine. We have always taken great care in our communications to the patient community and the public with respect to...

Yes, weird. Why don't they cite the evidence that shows that "physicians are reluctant to diagnose mental health or behavioral problems, preferring to label it as a poorly defined disorder, such as ... chronic fatigue syndrome" cause I would be interested in seeing it. I remember papers that...

It seems thad they just looked at symptoms "regardless of etiology" in a sample of the general population and how these correlate and cluster. I don't see what this has to do with bodily distress syndrome.

I thought there was agreement that manual traction, neck collars, and upright scans can cause significant harm as well. So I don't see what's funny about this. I agree. Basically, if a lot of ME/CFS patients say they have been diagnosed with CCI in a short period of time and mostly by the same...

With all the respect Sarah, but it seems that it's you who haven't kept up with what has been said in this thread. There is basically nothing that links ME/CFS and CCI in the scientific literature. So we tried to look at the closest thing which was the 2019 Henderson study on 20 patients with...

I think Dolphin is right. Pubmed gives hits if keywords are used in abstract information. If you used all synonyms of ME/CFS you probably get a figure of around 6000 to 9000 hits. Not all scienitific papers ard indexed on Pubmed but most of them are. Many of those hits will have little to do...

Well said.

I did this for the elections in Belgium this year and a surprisingly high number of politicians responded. And not just a standardized response from their staff, but an actual response written by them and sometimes with a personal anecdote that they know somebody with ME/CFS or a related...

I have this review in my folder and although I didn't cite it directly, I used it for writing my forum posts back then. So I'm not sure what you want me to update. The review writes what I wrote, namely: Perhaps you want me to write that death is very rare with these surgeries? If the review...

I also want to point out that that consensus statement only speaks of CXA angles that are "potentially pathological". It reads: So a CXA of 135 is unusual but they don't really know what it means yet, it depends on circumstances. In this video about the 2013 consensus statement, Henderson...

Isn't it also the case that this notorious consensus statement was never published in a scientific journal? I had to go find it on page 25 of some internal document of the Chiari & Syringomyelia Foundation but it seems that even that link no longer works. I think the organisation renewed their...

I think that in case of cancer screenings people in the demographic age group at risk, get a notification to get tested and sometimes if they want to participate in a scientific study about this. So maybe it's an option that GP's send a request to participate in the study to all patients in...

Yeah I wouldn't focus on the symptoms patients have during PEM because this probably differs for a lot of us. So I would focus on the payback/relapse/setback mechanism with statements such as: "I always have severe setbacks if I overdo it." "It feels like there's an energy limit to what I...

I think the Solve ME/CFS Ramsay grants give about 35.000 to 50.000 to a research team per year. See minute 2 of this interview with Andy: You can read about the British ME Association grants here (although I don't think their figures are per year)...

Van Houdenhove, probably the most influential voice on CFS in Belgium (he's retired now) used to speculate about Complex Regional pain Syndrome before he focused on CFS. He formed a biopsychosocial model of reflex sympathetic dystrophy (RSD), which I believe is an older name of a form of CRP, in...

I'm so used to your avatar now that I tend to picture you as a talking koala. I would probably be confused If I were to meet you in real life and see that you are human.

This is brilliant. Thanks for sharing.

Thanks for sharing this information. If I look back at the Holmes criteria I dont see a wastebasket for unexplained chronic fatigue, it seems more like an attempt by researchers to define a new and devastating illness. What you wrote is important but I don't think many patients will find the...

It seems that ME/CFS patients reported a little more of most things but that nothing really stood out. I suspect that these kinds of retrospective studies are mostly useful to exclude hypotheses and indicate that some things aren't important. Otherwise one would expect a much clearer difference...

Someone who knows the diagnostic criteria, is qualified to test for and exclude other possible causes for the symptoms and has done this more than a couple of times in the past.