Graded Exercise Therapy for Patients with Chronic Fatigue Syndrome in Secondary care: a benchmarking study, 2021, Smakowski, Chalder et al

[FMMM1]

Where to start.

"We think it is important to assess self-report outcomes in routine clinical practice within the UK National Health Service, where the routine use of objective measures is precluded due to cost"
This statement at least acknowledges that you should objectively monitor the outcome of an unblinded study - actually you must, otherwise the data tells you nothing i.e. since it is unreliable. However, it misses the point, which I think Jonathan has highlighted on this forum, i.e. the logic underpinning a trial is that you can apply the outcome to the wider (patient) population. So they don't have to measure the outcome throughout the NHS, they can objectively measure the outcome in a representative sample of patients - those participating in the trial. Think of how the covid vaccines were approved - a trial was conducted, on a representative sample of people; OK they did monitor the efficacy (post approval) in the wider population ---. Similarly, a ME/CFS intervention could be evaluated e.g. by comparing the number of hours participants spent in education, employment --- pre-intervention & post intervention.

I think a "Chris Ponting" (AKA someone who cares), assessing activity management or whatever, could come up with a means to objectively monitor outcomes --- or pester the research funding bodies to come up with the money to objectively monitor outcomes.

If you can't evaluate an intervention then don't run the trial - since the data is misleading. In fact these studies shouldn't be approved by University ethics committees/funded by Government Departments.

 

[rvallee]

Evidence from gold-standard randomised controlled trials

Opening with a blatant lie. Of course. Typical. None of those trials are controlled, of course. They are randomized clinical trials, somehow the continued use of RCT, which usually implies controlled, possibly distorted their thinking enough they don't even think twice about repeating a lie, which is usually the case when people are allowed to lie with impunity.

Especially with the qualifier of "gold-standard", which in clinical trials explicitly means "double-blinded placebo controlled", when the literal process they are promoting is a placebo response, so obviously it can't "control" for what it is trying to achieve by manipulating patients' reporting. That's just silly.

And another blatant lie:

We maintain that patients’ own perception of their symptoms is of utmost importance

The basis of their ideology, the model as it is explained for the purpose of the trial, is literally that our perception of illness is wrong. And here they are lying about pretending they take our perception of symptoms as important. I'm not bothering beyond that, anyone who lies this much should be completely ignored, liars don't deserve a platform.

It's not normal to allow academics to just blatantly lie like this. It promotes a culture of antiscientific thinking, encourages fraudulent behavior and generally serves no purpose whatsoever. Shame on the joke of a journal that published this self-serving drivel.

 

[Mithriel]

Indeed, prolonged inactivity is harmful even in healthy people

This is a very misleading statement. There is no evidence that ME patients, apart from the severe, have prolonged inactivity.

And the severe are not included in the research or the clinics. If someone can get to a clinic consistently - and they said that drop outs were not a problem - they are not inactive.

People with ME tend to be able to do things, get PEM, need to rest then do too much again. They are no more likely to be "couch potatoes" than any one else. People who experience constant fatigue are more likely to have a recoverable post viral fatigue.

 

[Mark Vink]