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We have created a new thread for the posting of items and discussion related to the epidemiology of Long Covid Long Covid epidemiology (prevalence, incidence, recovery rates)

I think muscle fatiguability probably can be measured quantitatively. When I tried to exercise my way out of my illness by doing pilates twice a week (inevitably with most of the rest of the week spent in bed), I would quickly end up with ridiculously trembling muscles. And it wasn't that I...

I agree with Jonathan, it's a muddle. The assessment of ME/CFS treatment trials is very inadequate - the authors needed to have a lot more skepticism. Statements contradict each other, and together all add up to an approach that is very vague, and could support anything so long as it is...

Here's the link to the 2017 paper reviewing treatments of ME/CFS. Treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis: all roads lead to Rome, 2017, Castro-Marrero et al. Yes, @cassava7, I'm left not quite sure what treatments are promoted. The attitude is not 'GET...

Spain produces quite a lot of ME/CFS research and we have some Spanish members, so I thought it might be useful to have a regional thread for Spain. There's new research out from the Barcelona team with Jesús Castro-Marrero, using trial participants from the ME/CFS Unit, Vall d'Hebron...

The melatonin/zinc combination had no effect on sleep: The safety of melatonin is one of my hobby horses. This study does not say what efforts were made to record adverse events. We know one patient withdrew from the treatment arm due to a rash from ibuprofen. How can it be known that the...

I guess at least the team did do a blinded, placebo controlled study, even if prompted by the manufacturer of the supplements. Plenty of ME/CFS clinicians have been prescribing melatonin and zinc for a long time. I note that the participants are heavily medicated. The first column of numbers...

This is from a Spanish team Jesús Castro-Marrero 1,* Maria-Cleofé Zaragozá 2, Irene López-Vílchez 3, José Luis Galmés 4, Joan Carles Domingo 5 Sara Maurel 6 José Alegre-Martín 7 1. Division of Rheumatology, ME/CFS Unit, Vall d'Hebron Hospital Research Institute, 08035, Barcelona...

This was an interesting paragraph that concludes "Therefore, perturbations of the normal levels of DPP4 would appear to be a hallmark of ME/CFS pathogenesis."

There are some good comments on how these studies could be done better e.g.this one on making data publicly available:

I think they were checking out an old finding: I was interested in this, as the two times my level of ACE was tested, it was slightly high. To me, it seems that the authors tried to do a solid study. They reviewed previous studies covering ACE in ME/CFS, appearing to understand good practice...

That's a good question. The authors suggest that the B-cell receptor repertoire is affected by microbial interactions, vaccinations, or immune mediated diseases such as lupus or MS. They give an example of a study done by a Japanese researcher that found a biomarker for patients with primary...

A reminder to vote, and that it's the end of daylight saving for some of Australia and all of NZ.

Wow. That all can be uncharitably interpreted as the thoughts of someone who struggled with the basic facts of medicine and so has a nicer time in an environment where facts aren't the driving force of treatment choice and there's a very low bar when assessing treatment effectiveness.

Interesting ME/CFS study out from a Japanese team looking at B cells Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al The use of three criteria (Fukuda, CCC and ICC) to select the ME/CFS participants and a good description of...

Yeah, this was an issue. I'm assuming the data is in the supplementary tables. Perhaps that indicates a problem, when the data is not front and centre.

I haven't looked into the data yet, but I think the study deserves to be read. From a quick skim read, they didn't find any evidence of differences in clonal expansion in terms of how many receptor types account for 50% of the variation. But they did find differences in the expression of some...

So, I think it's like the t-cell clonal expansion work. They looked at the B cell receptors in people with ME/CFS and healthy controls. The ME/CFS people met Fukuda, CCC and ICC requirements. So the first analysis was on 38 people with ME/CFS and 23 healthy controls, recruited in 2016. A...

A Japanese team Wakiro Sato ab Hirohiko Ono a Takaji Matsutani c Masakazu Nakamura a Isu Shin d Keiko Amano e Ryuji Suzuki c Takashi Yamamura ab a Department of Immunology, National Institute of Neuroscience, National Center of Neurology and Psychiatry (NCNP), 4-1-1 Ogawahigashi, Kodaira...

Damn. Heidi will be greatly missed.