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I think the main problem is that this flaw - a focus on subjective outcomes in unblinded trials with inadequate controls - is so widespread. If it was just a thing of ME/CFS researchers, then we would have a good chance of being heard. But this is all over the place. Accepting it as a major...

That would be alright. A lot of doctors (pretty much all doctors in Belgium) think CFS is just long-lasting fatigue or something like a burnout. So if they are directed to the CD website or IOM report they'll see that the consensus view by experts is that this is a severely disabling and...

I think that figure of 5% comes from the review by Cairns & Hotopf on the prognosis in ME/CFS. It almost 15 years old (and the data in it even older) but it seems to be the best estimate we've got. Most of the data in the review come from relatively short follow-up studies that didn't define...

It's a concept that is used in other illnesses as well, especially chronic (low back) pain if I'm not mistaken. See for example: https://lifeafterpain.com/info/chronic-pain/boom-and-bust-cycle-chronic-pain/

The fact that they reported these negative findings - which speaks against their hypothesis - suggest that their data could have shown a boom and bust pattern, no? I also suspect that their view of a boom and bust pattern is somewhat different from what patients describe as PEM crashes, in that...

They don't give any data on this. It isn't even mentioned in the results. Bit it isn't my Interpretation that there was no boom and bust pattern, the authors mention this in the discussion section. they have the individual patient data so i assume that is what their statement is based on. Or am...

That's possible. If you focus on 1 patient then you certainly have to follow up on him/her for a longer period of time to see boom-bust patterns. But they had activity data from 135 patients for 3-7 days. So some of these should have been in the phase of first doing too much and then suddenly...

So they couldn't find a boom-bust activity pattern. I also think they don't use that reference correctly. 17 refers to Van der Werf et al. 2000 which found no differences in day-to-day fluctuations between ME/CFS patients and controls. There's another Belgian study that also used objective...

I don't think this is good news. I'm afraid they'll just tweak it a little and that the main flaw (a focus on subjective outcomes in unblinded trials with inadequate controls) isn't going to be changed.

Actually, I think he phrases it rather well. He says there are all these papers that show there is an underlying pathology that we just haven't identified yet. So he recognized that the research hasn't identified a pathology, but that it suggests there is one that is limiting what patients can...

Moderator note: merged thread. Link: https://www.nytimes.com/2019/06/13/health/fecal-transplant-fda.html

Just found another reference for this, a letter from Prins, Bleijenberg en Van Der Meer in the Lancet. It was a response to the 2001 report by Whiting et al. Wessely & Sharpe were trying to come to some sort of consensus, by stating that "None of the rehabilitation approaches is intended to be...

Well done @Andy ! I was a bit surprised by their answer to the question of whether the handgrip strength test could do a few more repeats to see if ME/CFS patients show a decline as the exercise progresses. They argued that they do not want to do that because they are afraid to make patients...

I assume you mean this one: Voermans et al. (2010) Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos Syndrome.

I wrote an email to the editors and they said they expect it to appear next week.

Good point. But if ME/CFS patients would repeatedly show a different gut microbiome composition compared to healthy controls, and if other illnesses also show a different gut flora compared to healthy controls as seems to be the case, then perhaps this could be seen as a biological...

Did a quick scan of the papers and I don't think there is a study that reported reduced blood volume in ME/CFS patients compared to controls. Newton et al. (2016) reported an association between reduced cardiac volumes and blood volume in CFS but the blood volume in patients was not...

It would be interesting if we could work out which findings seem most robust or promising in ME/CFS research. I was thinking of: Increased risk of ME/CFS after EBV-infection, Reduced workload at the ventilatory threshold during the repeated CPET procedure Elevated ventricular lactate...

I don't really have an analysis. From reading the overview of Van Campen, I got the impression that most studies have found negative results (I haven't read all of those studies though). I think David Bell has stressed reduced blood volume in ME/CFS patients in lectures, but I don't know if this...

Something similar can be said of the cytokine and NK-cell studies. Cytokine studies usually contradict each other and there isn't really a pattern that stands out yet except perhaps for TGF-β, as Peter White's review suggested. Several studies have tested cytokines post-exercise but most have...