I don't think I've ever seen anything quite like this. I've noticed that paper after paper from the UK & especially Euro BPS tribe looking at "CFS" either uses the Chalder Fatigue Scale as a diagnostic, or they just make something up. Or they use a handy case definition that makes Oxford look like Ramsay. For instance, if you come across any of those awful vaccine arguments that involve CFS & HPV, a Norwegian study is extremely popular in that debate as it is said to have proven that the HPV vaccine does not cause CFS. The pediatric case definition used in Norway in that study is, like, three months of fatigue. Or is it two? That's it. And those arguing in favor of the safety of the vaccine, needless to say, act like they know everything but, needless to say, don't know anything about CFS or that that study can't credibly say much about CFS as you understand that acronym if you're reading this. So, regardless of anything having to do with those arguments, nothing is really accomplished. I'd like to think, or at least hope, that a widely used vaccine isn't going to lead to ME. Maybe it does, at low rates, who knows. But wouldn't it be nice if the scientists, the ones who consider themselves to be the adults in the room, actually read the study they wave because it suits their argument?
The shit that I'm beginning to realize goes on in non-English-speaking regions is starting to look to be worse than I would've imagined. There's a study in Nature today looking at Functional Somatic Syndromes in Bavaria. It's so bad that in a way it feels like we don't see this sort of thing published in English language journals much anymore, like something from, say, 1991 that's fortunately largely passed into obscurity. But this Dutch one is worse, I think. Still, the German publication led me to a 2017 review (in Deutsch) that was just atrocious. I also stumbled upon some references for the Fibromyalgia component of one of these that were arguably as bad as anything I've ever seen written about ME or CFS. The titles of the 3rd, 4th, & 5th articles listed in this 2003 issue of the Journal of Rheumatology are "Fibromyalgia: Real or Imagined?," "Pain is Real; Fibromyalgia isn't." & "'Fibromyalgia' and the medicalization of misery." (
http://www.jrheum.org/content/30/8) And last year a Fibro study found that "Clinicians have reasons for nondiagnosis: “There is no such thing as fibromyalgia” and “much of the medical profession is highly skeptical that the disease fibromyalgia—at least in purely physical terms—actually exists." (
https://onlinelibrary.wiley.com/doi/full/10.1002/acr2.1006)
The thing I can't get over in the Dutch FSS study is how they chose their CFS cohort. As a layman, maybe I'm just reading this wrong, or maybe it's somehow accepted practice and what the hell do I know. But this just seems nutty.
"Because we were interested in incident cases, we
excluded respondents who reported at baseline that they
had ever had a diagnosis of IBS, FM or CFS or who currently reported any of the key symptoms of these syndromes. The latter group was excluded because previous studies have identified the key symptoms as the strongest predictors of FSS, suggesting that early or undiagnosed cases are responsible for these associations (Hamilton, Gallagher, Thomas, & White, 2009). To avoid this problem, we
excluded from the IBS analysis participants who, at baseline, reported on the Symptom Check List-90 SOM questionnaire (Derogatis et al., 1974) that they experienced nausea or upset stomach ‘quite a bit’ or ‘very much.’
Those feeling tired ‘most or all of the time’ during the past 4 weeks [RAND item (Hays & Morales, 2001)] were excluded from the CFS analysis and those reporting painful muscles ‘quite a bit’ or ‘very much’ [SCL-90 item (Derogatis et al., 1974)] were excluded from the FM analysis."
So...they begin with the dubious proposition that any/all of these are actually FSS, and then they classify them on that basis rather than on any actual
'evidence-based' criteria. This somehow allows them to justify assembling cohorts
designed to define the conditions they're claiming to study...by being firmly
unlike anything resembling a representative cohort.
In spite of how poor the Oxford Criteria are, this strikes me as being well past anything I remember in any of the really bad Wessely/White/Chalder/Sharpe stuff. Am I missing something? How is this okay? Does it make any sense? If I'm reading it correctly, how do they get away with it? (Well, it
is in Psychological Medicine, but, still...)
This is one of the worst things I have ever seen. I find myself saying that from time to time, but I've never seen this. Final thought: if they could just redefine these conditions so dramatically to suit their purposes, even taking into account how bad Oxford is, why didn't Wessely & crew just do this, if it's somehow ethical, justifiable, accepted practice? The phrase about how they took a disease and reshaped it as one of its symptoms that's not even really one of its symptoms comes to mind, except they didn't even bother to at least retain that one symptom. Makes Wessely look like an amateur, frankly. Hey, I wonder who at Psychological Medicine peer-reviewed this.
Francis Creed was one of the many names I first heard about through @DxRevisionWatch more than 10 years ago. You don't hear him mentioned as much as Per Fink or some of the others. I guess he takes this stuff seriously.
