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Unfortunately, the follow-up examination of people who self-reported CFS did not include an clinical examination by a physician but more questionnaires. Does anyone have acces to SAQ or PQsm-12?

This seems to be the main conclusion: "...34% (n=29) of those who self-reported ME/CFS fulfilled diagnostic criteria for ME/CFS. The population prevalence rates were 1.1% and 0.4% for self-reported and confirmed ME/CFS cases respectively [...] "Our study showed that the use of self-reported...

Is there any indication that doctors use this code for ME/CFS in the UK? I remember a study of ICD-10 data in the US where it was mostly used for older people. I would say that somewhere between 0.2% (Nacul et al. 2011) and 0.4% (Jason et al.1999) is still a good conservative guess. I...

Yes the only things that were consistently associated with FSS diagnosis were female sex and poor health-related quality of life. The other things they tested (Physical Activit, Kinesiophobia, Illness Perception, Anxiety, Depression, Health Anxiety, Adverse Life Events) did not show a...

For what it is worth: made a transcript of what Koroshetz said at the beginning about effort with some of his slides: Time 9:03 "...Now the problem is the word effort has connotations in the lay press that don’t apply to what we’re doing as neurologists. What we’re trying to think about is how...

At the end of the NIH conference about the intramural study Nath said the following: Time: 5:31:25 "The problem is now is that if you were to now study one compound after another, I think we would be here for… I think it would take us a century or longer to be able to go through this list. Our...

After rewatching, I did not interpret his statement as a criticism. I don't think he meant that current advocates are bad but that we need more of it to make a change and get the research funding that ME/CFS deserves. I was more disappointed by Nath's comments earlier in the conference. He said...

Thanks. I think I also misread as the p-value of 0,01 does seem to refer to a difference between groups.

It costs nothing to post a preprint with the raw data before submitting it to a journal.

So they report the mean decrease over time in both groups rather than comparing the means of the groups directly. To me that suggests they are trying to hide a null result [EDIT: but would be interesting to hear what others think: is this analysis justifiable?]

Here's the abstract: Abstract Objective: To evaluate the efficacy and safety of TNX-102 SL, a once-nightly sublingual formulation of cyclobenzaprine, in reducing pain in patients with fibromyalgia (FM). Methods: RELIEF was a double-blind, randomized, placebo-controlled trial. Overall, 503...

For me, the name CFS itself is really problematic and a big deal but there does not seem to be a good solution for it. ME has its own problems, especially for getting recognition in the medical and research field and trying to introduce a new name like SEID does not seem realistic either. As...

As far as I know SEO is in principle free: it refers to ways in which you can adjust your content and website to appear higher in search engine results. Often it starts with doing keyword analysis which means looking at which terms are used the most by users. In our example, CFS is probably used...

The main idea seems to be to test multiple drugs in the same trial/set-up.

I don't know if this relevant to your study and aim but a forum member (@chillier) recently did some interesting home experiments using eye tracking: Measuring Cognitive Exertion | Science for ME (s4me.info)

Great

Great blog Simon, thanks. Sounds like a useful and worthwhile study. The original Norwegian study was published back in 2016. I wonder why the Norwegians never replicated it themselves.

There was a Q&A afterwards where he also spoke about the PACE trial and ME/CFS a couple of times. Perhaps someone else can make a transcript of that.

For what it is worth: here's a transcript of the part of his talk that is about ME/CFS and Long Covid: Starting at minute 31.22 in the video: … So then covid came along. The terror of covid came along. I was extremely stressed at that point and suddenly I became the patient. I’m not going to...

He mentions Spock's idea that babies should lie on their belly, the view that doctors should watch patients take their TBC medication (to ensure they take them), the Long Covid ivermectin review, and the treatment of intestinal worms in third-world countries (the worm wars) as examples where...