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...
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...
Tissue was not tested but I wonder if a virus was there if it would not leave traces in the blood and elsewhere. As somebody noted: "The question is what these viruses can do while replicating at such a low frequency that they are not detected in the blood.
Some quotes from the paper:
"At the initial visit, all adult patients met the CCC and all pediatric patients met the CDW-R and/or 404 CCC criteria as was required for ME/CFS diagnosis in this study. However, due to the absence of 405 pain (n=3) or neurocognitive manifestations (n=1), 4/12 (33%)...
Interesting editorial.
When ME/CFS advocates argued that more funding should go to testing non-pharmacological interventions we were always accused of having a reductionist mind, biased against psychotherapy, blocking progress, etc.
And anyone that mentioned that some seem to minimize ME/CFS...
Thanks @Simon M and @InitialConditions !
I agree the PHQ-2 seems the least problematic, but it is only 2 questions and was mainly intended as a first screening tool.
Frequently used questionnaires for depression such as the PHQ-9 and Beck Depression Inventory focus a lot on somatic...
I think StackOverflow's took the right position. In my view, Chat GTP is very useful if you use it as a language model to help generate text or easy code, but not for things that require a deeper understanding or logic.
I heard someone make the analogy with self-driving cars. The technology...
Many questionnaires used to measure depression ask about general symptoms such as fatigue, sleep, appetite, concentration etc. People with a chronic illness such as ME/CFS already have those symptoms and are thus more likely to score high on these depression questionnaires, even if they are not...
Interesting study. They did some simple cognitive tests before and after a 10-minute NASA lean test. The ME/CFS and Long Covid patients did worse before the lean test than controls. They also got worse after the lean test while the healthy controls did better than before. The main results are in...
But frustrating that the ME/CFS community has been trying to get accurate info in the newspapers about problems in ME/CFS healthcare or interesting research studies while being ignored by editors. But when there is a US group doing experiments without ethical approval, it is suddenly fine to...
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