This article was first published in Dutch for a journal of rehabilitation physicians. I was asked to correct the text. I didn't comment on the biomedical part. It's not perfect as not everything I adviced was added (which I think was due to a limited amount of words they were allowed to use) and some things I'm not completely in agreement with. Nevertheless it's an important step in the right direction. I wrote this additional information in a post:
"A very important article about long COViD, ME, post-exertional malaise and rehabilitation.
People who suffer from post-exertional malaise (PEM) can become sicker after minimal exertion, sometimes even permanently. Unfortunately, this is often not taken into account, with all the dire consequences that entails.
The authors indicate that the slogan 'Exercise is Medicine' does not apply to patients with Long Covid and other conditions with PEM. For the time being, it seems the right approach to follow a personal program aimed at preventing post-exertional malaise in this patient population.
I would like to add that orthostatic intolerance, the inability to sit or stand upright for long periods of time due to problems with the autonomic nervous system and blood flow, can also cause PEM. For very severely affected people who are bedridden, even sitting up to a 45-degree angle can cause a PEM crash. This should also be considered as a physical exertion.
My personal opinion is that any expansion of activities should only be considered after a long-term reduction in complaints. The WHO, for example, talks about at least a month. (*I read this somewhere but honestly I don't remember where exactly). It is also important to note that stabilization is not the same as reducing symptoms.
It was very special for me to be able to contribute to this paper. As a professional ballet dancer, I was surprised 16 years ago that no one understood why I became sicker after exercise. There was no guidance whatsoever, and even though I had clearly become sicker, I was not taken seriously. Over the years, my mission has been to publicize PEM and thus prevent iatrogenic damage.
As far as I know, we have never seen a paper with so many Dutch specialists writing about PEM and rehabilitation. In my opinion, this is truly a milestone, and the authors can certainly be very proud of this. In any case, my gratitude is enormous! I say encore!

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