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I can think of 2 German studies: One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus, 2023 Scheibenbogen et al Long-term symptom severity and clinical biomarkers in post-COVID-19/[CFS]: results from a prospective observational cohort, 2023...

I'm not sure what I was writing about here anymore. At least it seems to me now that "Dara" should read "Cyclo" or at least I can't remember a further "Cyclo" trial being planned.

Maybe one has too look at the other studies to see cohort details, but with things written as they are in this study I find the cohort too badly characterised to tell you anything useful. I'm disappointed that this is still the type of thing that gets published after 4 years of Post-Covid...

Seems quite possible that there'll be a slight increase of MS cases due to COVID-19 and also EBV related cancers.

Expect that there have been several large scale studies looking at different viruses in ME/CFS and HC and finding largely no differences. So any explanation will have to be different to the standard explanation seen online.

Probably not a good sign to begin with

Only skimmed the abstract but the HERV-K dUTPase IgG antibody result surely looks like a multiplicity problem, where they report one positive but not all the negative findings.

I think we're talking at cross purpose here. My comments are all just about the Born Free Protocol. I indeed misunderstood what you meant with "negative bias" but it wouldn't change any of my comments about the protocol. Beyond that I see little point in having lengthy discussions on "whether...

I find it unreasonable to expect that something like that should show up in the data unless you have massive sample sizes. Given what we know about ME/CFS it seems very unlikely to me. According to Google it generally doesn't work for other conditions either so its hard to see why it should for...

I think we can call things out for how they are: This is whole thing is simply quackery. That has nothing to do with negative bias. How should someone with MS feel about the things Joshua Leisk is saying, whilst he claims to have found something with efficacy against MS, autism, ME/CFS...

I don't think that would be the main goal at what is being supposed here, at least how I interperet it. What you're proposing should already be possible via existing pipelines I should think (using the DecodeME cohort or the German national patient register or the Dutch cohorts). Why is it not...

I don't think one needs to complicate things. I can't see any problem of doing certain monitoring things long-term. If someone develops a condition and is treated for that you simply record that in your data, as one would for other treatments and do an appropriate analysis as one does for other...

But for example you don't have any data showing exertion-PEM patterns, nor temperature data because this data was never recorded. But I agree somethings you'll track for a couple of months only. Other things you'd want to track over many years (like recover/remission/worsening).

I think most importantly you won't be collecting some of the more interesting data like. Apart from this you'll probably always have considerable sources of bias, for example survivorship bias with such attempts. Those that have recovered might not be hanging around on S4ME etc. Moreover I...

This is just my personal impression as an outsider as well, which surely is at most only partially correct and at best cloudy.

The dutch publish this LC data yearly afaik, but this is not necessarily interesting data I would say. It's just a LC health tracking study, but other things like temporal relationships between PEM and exertion ect are not captured. No study has captured that well afaik.

Yes! Yes! Yes! As I've mentioned numerous times this can easily be accompanied by some easy bio-data (say HR, temperature or similar). The studies I've seen doing something similar have not looked promising to me. If there's 2 studies that I think should happen yesterday it's this and a sleep...

If plasmapheresis never really works for antibody mediated diseases what out of the box thinking is needed?

I don't see how one can explain any observations in severe ME/CFS by extremely marginal differences in lactate levels which might not even exist.

I’d think this would be a whole flurry of studies on lactate and there'll be a whole flurry of studies on heart rate or other things as well. I’d assume lactate will have been measured as part of some of the CPET studies at rest, then lactate and/or related metabolic pathways will be found in...