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Thanks for explaining. I was indeed thinking about something more bell shaped, but I suppose not knowing anything about clinical trials might make such thoughts rather irrelevant.

Would the current non-existence of a biological endpoint that could be meaningful in ME/CFS not present a problem? You might track IgG levels but what if people actually do respond to cyclo but do so in a completely different fashion and at a strange dose due to something weird for example...

I'm not sure about any of the things I've said. This was just how I've read the room, which might be very incorrect. Regarding less toxic drugs to target some of the possible mechanisms above and which is also what the case report here is about: From what I've vaguely understood Efgartigimod...

Are we sure about that? I thought the problem always had to do with the feasibility of a cyclo trial. From what I've understood you cannot meaningfully placebo-control cyclo. So the only answers you'll get will be from some form of randomised controlled trial, with likely insufficient control...

It might seem tempting to use such papers from an advocacy standpoint, ME/CFS is clearly occuring in LC patients and is a very significant manifestation of LC. The problem however is that people can then run a CBT or GET trial on LC patients or simply do nothing and once most patients improve...

Indeed for example Scheibenbogen's studies by definition tend to focus on the ME/CFS subtype of LC and are as such of course not representative of LC (and yet she had shown in a different study that only 50% of ME/CFS like-LC looks like ME/CFS after one year). Interestingly they also didn't...

Dear @siobhanfirestone thank you for sharing your story. Do you think there is any reason why your story should be viewed any different to a person with a similar illness duration and severity that had tried various things and suddenly reports recovery in period that followed after they had...

Thanks. I read that. I was just wandering who the audience largely is. I presume it's mostly LC and ME/CFS patients. Do you know whether there is an audience outside of that or whether larger news outlets sometimes pick up on articles?

What is the intended audience of the thesicktimes?

Yes. The assumption that is being made here is that such a drop in probability is not fully explained by things such as genetic predisposition. Not because there is a logical reason to make such an assumption, but simply because if something like DecodeME finds a meaningful genetic...

For this thread I will be working under the assumption that ME/CFS is rarer following later subsequent Covid infections than it is following initial infections (think of something that the probability for someone healthy to develop ME/CFS after a Covid infection is like flipping an unfair coin...

I think the subset of people experiencing post-viral fatigue after a Covid infection is substantially larger than those experiencing ME/CFS. I think the true rate of ME/CFS after Covid is probably relatively low (I would think it occurs in far less than in 1% of Covid infections), which doesn’t...

Similarly important might be whether other medical examinations have taken place to rule out other conditions. Even that is something that could be picked up by a questionnaire. Were you given a blood test, were a,b,c tested etc. I suspect had this study run an analysis the rate of misdiagnosis...

Interesting to see Ascherio's (who lead the well-cited MS-EBV study) name on this. Makes it a bit more bleak that ME/CFS wasn't included in their initial analysis. According to @Robert 1973's contact with him, they did at least think about it. Maybe if DecodeME delivers a clue it there'll be...

For the proposed study by @Hutan above I would also find it sensible to have one group of ME/CFS patients that has reported a variable status of ill health, i.e. better periods followed by worse periods etc, vs one group of ME/CFS patients who has reported no change in health, i.e. a rather...

Probably quite pointless anyways to analyse biosamples when you're comparing someone who had a cough for 8 weeks, with someone who had a stroke, with someone who has PICS, with someone who suffers from ME/CFS.

It appears they used a battery of tests (11 tests in total) to assess cognitive performance via the online platform cognitron developed by Adam Hampshire. This is the same platform used in Post-hospitalisation COVID-19 cognitive deficits at one year are global and associated with elevated brain...

Now published in Nature Medicine as Post-hospitalisation COVID-19 cognitive deficits at one year are global and associated with elevated brain injury markers and grey matter volume reduction.

Without having time to look at anything closer these results would appear to be very significant. There's the caviat that this study was conducted with the wildtype strain, their follow-up study with the Delta-strain should yield more clues. However the results would still remain significant...

In which case you can now be considered an anti-scuba-diving activist.