The problem is that within a short period of time you cannot know whether someone has ME/CFS or not. It might be post-viral fatigue which ought to look quite similar in the first weeks or something else that might resemble ME/CFS. So you'd really have to have a study setup which tracks patients...
Scheibenbogen has been running and publishing such studies both for Covid and EBV (see for instance One-year follow-up of young people with ME/CFS following infectious mononucleosis by Epstein-Barr virus and
Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue...
So supposedly a negative result for small fiber neuropathy. This would be contradicting their own meta-analysis
A systematic review and meta-analysis of the prevalence of small fiber pathology in fibromyalgia: Implications for a new paradigm in fibromyalgia etiopathogenesis.
Seems sensible to me within this study, but isn't the whole idea based on a study with far less participants were they looked at how a subset of genes differed in a GWI(+) and GWI(-) cohort?
You will find any type of association you want to find with Long-Covid because the definition is so vague that any results depend on the sample you wish to choose.
I would agree! But without rigorously methodology you have no idea where the noise might be coming from...If HLA-II alleles are...
What exactly do they mean by PASC Algorithm? Recover has published different studies with different scoring systems. I assume they are referencing their own symptom score published in
Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection, 2023, Thaweethai et al?
That symptom...
From what I've understood from their earlier papers their whole hypothesis is based on a sample where having had this vaccine correlated with GWI status and severity. The question is whether that is a true relationship or just a correlation within their sample set. Other studies have found a...
Knowing nothing about GWI I had been under the impression that there were some primilarly findings heading in the direction of genetics and "something to do with nerves". So I'm a bit curious where their hypothesis for the anthrax vaccine came from. If it was a true association shouldn't it also...
I agree with the others that ME/CFS Science possibly sounds a bit generic. Have I not already seen accounts with such a name?
ME/CFS in Depth has a nicer ring to me, but I wonder whether it says enough about what you actually do?
Whilst I like the sound of "unravelled", "Science unravelled"...
From what I recall there was also a study by Hellemonds that tagged TSPO (the molecule used was a different one). They published a preprint that made it all over the news with 2 LC patients, but from what I've heard the full study actually had very mixed results (and hasn't been published yet...
As far as I'm aware this is not the case. Pacing is a means to hopefully avoid getting worse and living a life as good as possible, it is neither been shown to be curative, nor a treatment nor can it definitely prevent worsening. It is a means to manage a horrible situation as well as possible...
To ask the standard questions:
Can such differences be driven by inactivity?
Can such differences be driven by something not to do with ME/CFS (for instance more recent exposure to infection or vaccination)(I think @Jonathan Edwards has hinted at that this being a possibility, but the authors...
I think there might be an interesting aspect here related to "cognitive fatiguability" and I wonder whether this has been sufficiently examined, here and in studies of ME/CFS.
What I don't quite understand is how one might think cognitive fatiguability could influence results but then one has...
Indeed but so are ALS and cancer and yet the ice bucket challenge or the Livestrong Armbands have been a big success. Of course there are people and charities that have tried something similar (more recently the LemonChallengeME/CFS tried to go viral) for ME/CFS but simply haven't quite had the...
I don't think that would necessarily be true. It might be more so the case that they prefer or are simply more adapted to a different stance altogether: Instead of someone writing a critique, that person simply shows what the problems are by doing the same work but doing better by improving...
The problem with the Action for ME Walk is that it appears to be pwME walking for ME which is the opposite of what you want to be doing and of what is being discussed. The others appear to be great initiatives by individuals raising funds by doing some form of challenge similar to what Mike does...
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