Adverse outcomes in trials of graded exercise therapy for adult patients with chronic fatigue syndrome, 2021, White & Etherington

The Journal of Psychosomatic Research is already dealing with the previous White paper, which misreported the follow-up to GETSET. Now they are allowing him to publish another piece of crap. The journal is obviously having an identity crisis. The current and previous two editors have categorically stated that subjective outcomes are fraught with bias when blinding is weak. But the journal's advisory board has White, Sharpe, Fink, Rosmalen and others who see no problem and specialize in unblinded studies relying on subjective outcomes. Either these studies are valid, per the auhors, or they do not provide authoritative and actionable evidence because of bias, per the journal editors. Both can't be true. The journal is in an untenable position.

 

Never heard of him but I suspect this says it all:

(The conflict of interest being income for rehab.)

 

To be fair, Kay Hallsworth is no longer in the Navy: her bio statement begins with "was". (I disagree with the characterization generally - one of the criteria for consideration was "A history of interest in research on ME/CFS".)

 

The authors themselves now seem rather unenthusiastic or unsure about GET for ME: "GET is probably safe..." Not a ringing endorsement. (my bolding)

Also more participants in the GET arm dropped out from trial follow up....doesn't appear to bolster the profile for this "therapy".

GET for ME; what's the point for patients and their families if the goals of recovery, or at least significant improvement aren't met? Return to work or school? Are these ever measured or reported on? If memory serves success in these areas falls far short, if even measured or reported on. I guess results based goals are not important. Research funding continues in spite of this. GET for ME for its own sake.

 

GET for ME is "probably safe", looks like a retreat. CYA. In case of what...?

 

Wonder why the BPS Movement travels in the same groove over and over and over again.

 

Maybe resubmission of the FOI request is needed, given they have clearly managed to overcome their primary obstacle to fulfilling it.

 

I think there is an inherent bias within the CGI scale, given that someone could feel noticeably worse (and thereby of clinical significance), albeit not much worse. In which case their likely choice is going to be 5 on the scale, minimally worse, and thereby allows these analyses to consider out of scope for considering as deterioration.

 

That's not a bias in the CGI scale. That's how the authors chose to define evidence of harm, most likely because that allowed them to find no evidence of harm.

 

It is very clear the main objective of this paper is to impact the NICE guideline review, given how it comments strongly on the implications of the current draft guideline being ratified.

 

Which therefore still means the scale induces bias.

 

If they are so confident of how right they are, then put their money where their mouth is and release the rest of the PACE data; they clearly should have nothing to fear by doing so. And they have demonstrated they still have the resources available to be able to do that.

 

What about the drug for arthritis that was banned because less than a hundred people worldwide were badly affected?

I cannot believe that GET is not banned on the basis of the number of people who claim they were harmed. It would be a simple matter to check that people were house or bed bound

 

With an added "why did you mislead the tribunal?" and a note to the tribunal whether they care about such things, perhaps?

This was an official response. It has clearly been revealed as BS. Does making false official statements to a tribunal matter in medical research and ethics? Doesn't appear to be the case. But the original FOI request was either clearly responded with a lie, or they felt no need to go back on it if and when White's health improved enough for him to be able to fulfil such a simple request, one that was already taken care of as part of the research protocol, confirmed by the official notes.

 

[my bold]

Whilst still including the BS spin clause that it's all the patient's own fault if they still end up in a mess.