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One caveat is that the mean age of participants was 60 and they were recruited before vaccination became widely available.

If I understand correctly, the selection criteria already required persistent moderate to severe fatigue and exertion intolerance with PEM. Therefore the study is unable to give an estimate of how many Long Covid patients have ME/CFS except that it is likely smaller than the 51% (55/106) found...

Interesting, thanks for sharing. The original trial had severe limitations though. This paper writes: "To mimic clinical practice, STAR*D used an open-label research design with no control group during any phase of the study."

Tweet links to this article by Eric Topol The heightened risk of autoimmune diseases after Covid ERIC TOPOL

Summary Background Case reports suggest that SARS-CoV-2 infection could lead to immune dysregulation and trigger autoimmunity while COVID-19 vaccination is effective against severe COVID-19 outcomes. We aim to examine the association between COVID-19 and development of autoimmune diseases...

I think we saw something similar in the EBV-studies, for example the one by Jason and Katz in Chicago. Early on in post-infectious ME/CFS the improvement rate seems to be quite high.

So at a first visit at long covid clinic, a third of patients met ME/CFS criteria but at the second visit half of them had improved and no longer met the ME/CFS criteria.

I remembered that she also gave a talk presenting the same ideas a couple of years ago, I think at one of the OMF-conference but I'm not quite sure.

Would it make sense to test if Metformin could reduce the risk of ME/CFS following EBV-infection?

I was wondering if a trial of Paxlovid for EBV-patients would make sense to see if it would reduce the risk of ME/CFS. But I had not realised it was specifically designed to tackle SARS-CoV-2, so chances are probably low that it would work for EBV. Perhaps a trial with the diabetes drug...

I think the 2011 analysis by Pishur et al. that highlighted the gene WASF3 in CFS, used data from the Wichita CDC study which used a very broad interpretation of the Fukuda criteria and found a prevalence above 2%. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3089886/ That isn't necessarily a...

The description probably says more about the therapists at the clinic than the patients.

I think the tendency for physicians to blame patients, especially if their illness is poorly unexplained, is much older than the neoliberal era, which people usually equate with the economic policies of Tatcher and Reagan in the 1980s.

Caveats: This was an online survey that relied on participants' self-reports of ME/CFS diagnoses, so it may not be very accurate. It was interesting that younger patients reported more severe disability, contrary to what is seen in the main population.

For those who are having difficulties in reading the whole text, I suspect that section 5 is the most important one as it presents the suggested actions to take: 5. Agreed actions To address the problems identified and achieve the impact proposed by our stakeholders, we have agreed the...

Had the same impression. In my view, the main problem lies in the medical and research community and there is a limit to what governments and politicians can do to fix it. But the initiatives suggested in this document all seem quite useful even if they are unable to address the root problem.

Well said, and largely agree. I have been ill for a long time and it is becoming more and more difficult to imagine that I will be fully healthy again one day. So hearing about other ME/CFS patients who have not recovered but only improved a bit and then were able to make something interesting...

Ren Grill, the musician who was in Unrest know also seem to have a successful YouTube channel with over 1 million subscribers. https://www.youtube.com/channel/UCqq3VcwPGseErHUa0-xLInQ

Recently I also noticed that others had success on YouTube. Vlad Vexler has more than 100.000 subscribers for his channel where he talks about Russian politics and philosophy. He has also made video's where he discusses what it is like having ME/CFS: Vlad's ME Diary - YouTube

I thought it might be useful to compile a list of inspiring, interesting or notable people with ME/CFS who despite their illness were still able to achieve a lot. In most cases their health seemed to have improved as with (severe) ME/CFS it is nearly impossible to achieve notable things. The...