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From Jean Hailes for Women's Health (an Australian charity) I don't know where they got the following from, but JHWH seem like a credible organisation:

Not to diminish the hard time some people have, but the time when I had symptoms was short and not much of a problem. Just some hot flushes, I can't remember much else. Of course, with ME/CFS, there's a significant amount of time feeling rubbish, so sometimes it's hard to tell what is what...

Posts relating to Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes, 2020, Miller et al have been moved to a new thread for that study.

A is GDF-15; B is FGF-21 - levels in the acute phase disease It's just too small a sample and too confounded to tell us anything. GDF-15 Limitations So it sounds as though the 6 controls required medical treatment for more than three months.

That's what I was looking for - how many people? Turns out they looked at 13 cases at the three month mark, 7 of which were categorised as long COVID. So, 7 Long Covid; 6 controls to make this biomarker. Mean age: controls 44.5; long COVID 56 years Female percentage: controls 50%; long COVID...

From the authors' response, which is fairly long, the final paragraph: I'm not arguing with them about their actual results - it's quite likely that none of those biomarkers in blood are suitable biomarkers to identify patients with PASC. But they completely sidestep the main problem - the...

Summary: inoffensive, relatively short piece from Koroshetz, talking up NIH progress on ME/CFS (roadmap, intramural study), biological mechanisms mentioned a few times and no whiff of effort preference/BPS ideas. Last paragraph: It's almost an apology.

I find it rather interesting that there is evidence of brain injury at all - it is seeming to be a consistent finding (although certainly not in all people with a Long Covid label). Some of the levels of GFAP were over 100 pg/ml, so, not insignificant, I think.

Other infections that might cause ME/CFS: e.g. (from an another paper on the same study, linked in post#2 above) Case definitions Then there is the question of who was labelled as having Post COVID-19 Condition: (from that other paper on the same study.) Given that the participants were...

It's as if Wyller did this expressly to squash the idea of Long Covid as a biological issue, and instead to promote the 'there's nothing to see here, it's all in their minds' idea. So the SARS-CoV-2 negative group consisted of young people who 1. had turned up for testing due to a suspicion...

I'm interested in the low levels of IFN-y and high levels of GFAP found in some people with LC. Those analyses do not have the same problems of no individual data and no convalescent controls that the autoantibody studies have. Note that pro-inflammatory cytokines did not differ between the...

Fabulous, @Tapanui 'Flu

I thought people might be interested in this 1998 paper, in the light of the recent studies claiming to transfer Long Covid symptoms to mice via IgG from Long Covid blood. I wonder what came of this research. These researchers did not pool human sera samples.

Transfer of human serum IgG to nonobese diabetic Igμnull mice reveals a role for autoantibodies in the loss of secretory function of exocrine tissues in Sjögren’s syndrome - link Christopher P. Robinson,* Jason Brayer,* Shigeo Yamachika,* Thomas R. Esch,† Ammon B. Peck,‡§Carol A. Stewart,§¶...

Certainly MS is different. But I think it's still legitimate for the ME Association, for example, to expect to have credibility when publishing a guidance on operationalising the ME/CFS guideline. To some extent, if patient charities act like respected patient advocates then at least some...

Phosphodiesterase-5 (PDE5) Inhibitors In the Management of Erectile Dysfunction

This forum thread may be of interest: Use of sildenafil (viagra) to alter fatigue, functional status and impaired cerebral blood flow in ... CFS, 2020, Friedman (Pfizer) There were hints of sildenafil helping with CFS symptoms, but problems with the study meant no conclusions could be drawn...

Yes, it's so true that efforts to educate can be completely counter-productive if not done right. (And probably even sometimes when they are done as right as is possible). I do think that the fact that the document has been produced with the support of a number of patient charities, and those...

That's very useful context, thanks @Cinders66. I think though that we do need to worry about what sceptical doctors will think, because that is the audience that I think we are trying to persuade. They, to a very large extent, are the ones with the control when a person with ME/CFS is in...

And so too does CBT for ME/CFS, it has much the same components ('You are not a reliable interpreter of what you are feeling', 'You need to follow my instructions', 'You will only get better if you want to, and you put the work in', 'Your personality is the problem, and we can fix it'.) I...