Discussion in 'PsychoSocial ME/CFS Research' started by Tom Kindlon, Aug 25, 2020.
via Dr. Marc-Alexander Fluks
Doesn't seem like they chose relevant cognitive tests. Or relevant participants. They nearly all show almost identical performance with healthy controls. I can't even do the easiest tasks of a profession I was highly skilled at and did for well over a decade, things I would be able to do even very drunk and was professionally trained on. They're clearly not testing the right things, the differences should be very obvious.
The tests seem relatively pertinent so I assume the issue was with the participants. Some of the tests take nearly 1h to take and there are several of them. I can barely fill in a disability form asking basic questions that I know intuitively, one that a healthy person would take about 15 minutes to fill (I'm fortunate that where I live those forms are fairly short, thankfully). I abandon at least half of the research questionnaires I begin because they are simply too demanding, even though they actually aren't.
That abstract has to be read really carefully - distinguishing the subgroup with CFS from the broader group with chronic fatigue or CFS after EBV.
On objective measures, the CFS subgroup was worse than the broader group with chronic fatigue or CFS.
As @Michiel Tack says in that tweet, this is evidence that researchers need to carefully choose their sample. CF and CFS are not the same.
Out of 200 adolescents with an EBV infection followed for 6 months. 5 participants dropped out. so, out of the 195 people, 91 had chronic fatigue at 6 months. That seems incredibly high (47%).
The chapter on the causes of ME/CFS is enough to make you weep. They quote Pedersen:
and settle on the 'sustained arousal model'
The conceptualization of fatigue from an understanding of sustained arousal has provided the framework applied in the overall CEBA project.
Now there's a name I wish to never hear again. They have done terrible harm.
Since it's part of CEBA I'm not surprised they went with the sustained arousal model. :/
I do wonder when they (CEBA project, not this particular thesis) decided to look at both CF and CFS. In the music study they include patients with CF who "if having additional symptoms" could also be diagnosed with CFS, even if the protocol states they were interested in those who already had developed CFS.
If 'sustained arousal' - taken to mean something in the range of what one might reasonably intuit it to be implied to mean in the given context - is the cause, one wonders why there is a definitive lack of treatment success with any of the wide variety of sedative and anxiolytic drugs available.
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