U.K. trial Rehabilitation exercise and psychological support after Covid 19 infection (REGAIN) Warwick University

[rvallee]

This is a paper about the fact that they're doing a trial that will be published in a paper?

The idea of taking into account ME and PEM is contradicted by pretty much all the choices that went into this. It's beyond any possible doubt that this BPS stuff is useless. It was invented explicitly on the belief that this is not a real condition, rather a disorder of perception. Or whatever. This is not even disputable.

It's simply an insult to keep on wasting people's lives while pretending this is anything but continuing the same denial and gaslighting that blocked all efforts to help us and ruined millions of lives. They can say whatever they want, it's what they're doing that counts and this is harmful.

 

[RedFox]

"Post exertional malaise

During the development phase, the trial team were contacted by several organisations representing the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community with concerns relating to the potential harms of unsupervised vigorous exercise for people with long-COVID, in particular the risk of post-exertional malaise18. We recognised the lived experience and expertise within these groups and sought to ensure that REGAIN practitioners were appropriately trained in risks relating to post-exertional malaise. Furthermore, early identification screening measures for post-exertional malaise were incorporated into the intervention protocols, particularly during the initial one-to-one consultation and every subsequent exercise session. Practitioners were encouraged to monitor the progress of participants during and after exercise sessions in order to ensure that exercise intensity and volume were within individuals’ capabilities and did not cause undue persistent fatigue or other problems."

Encouraging. We'll see whether screening for PEM is properly executed. It would be far better to simply exclude people with PEM. Assuming it's actual psychological support and not ME-CBT, it's a bandaid on a bullet hole.

 

[Sean]

Practitioners were encouraged to monitor the progress of participants during and after exercise sessions in order to ensure that exercise intensity and volume were within individuals’ capabilities and did not cause undue persistent fatigue or other problems.

Encouraged?

Hmm.

How about compulsory, independently monitored, and fully transparent to patients before they sign up for the trial?

 

[RedFox]

I didn't notice the word "encouraged" there. In that case, it's just PEM-washing. (Saying they're managing PEM safely without actually doing anything). I hope I'm wrong.
The only ethical way to conduct an exercise study on LC patients is to screen for and exclude people experiencing PEM.