This a google translated version this response:
https://anilvanderzee.com/reactie-trouw-ontzeg-patienten-met-long-covid-niet-bij-voorbaat-de-fysio/
PEM is new!!
My response to one piece in Trouw written by pulmonologistsJoost van den Aardweg, Harm Jan Bogaard and Jurjan Amanbased on the study of Appelman et al. 2024 where they are concerned about how this was reported in the media. That it could discourage people in advance from participating in physiotherapy, rehabilitation and psychotherapy. I partially agree. Not everything is presented in a nuanced manner, but the authors also write some special things themselves.
I leave the part about the study itself to the professionals. Yet post-exertional malaise (PEM) is the core symptom of ME, which has been the subject of research since well before the pandemic, as well as muscle abnormalities such as in a 1985 study by Behan et al. which showed similar findings, including necrosis. About 50 percent of the Long-Covid patients fulfill the criteria of ME and therefore the findings of Appelman et al. are therefore not entirely isolated.
Exercise program?
However, I am surprised that the authors still believe that we should treat people with post-exertional malaise with an exercise program?
It position of the Royal Dutch Society for Physiotherapy recommends pacing. That is moving within your limits as much as possible without triggering a PEM crash. This is not with a focus on building activities or training. The focus is stability and for many people ADL is only possible to a limited extent or not at all. Pacing also does not equal inactivity. Although some training may still be possible for some, that is certainly not the goal of physiotherapy for people with PEM.
It matches it advice from the Association for Sports Medicine and the guideline of the Dutch Association for Occupational and Occupational Medicine. Likewise what the CDC, NICE, Health Council and the Belgian Supreme Health Council in ME who all recommend pacing. Unfortunately, many physiotherapists are not yet (enough) aware of PEM and pacing, which means that physiotherapy has often caused iatrogenic damage. The reluctance is therefore understandable. Especially when these types of articles are published that paint a wrong picture that would be beneficial for people with PEM.
In your head.
Indeed, no direct research has been conducted into whether long COVID could be “in the mind” and the use of this description is certainly not very helpful. This term often also means that people imagine something as if it does not exist. Unfortunately, this was also mentioned in the media in the same breath as depression or burnout, for example, which is of course not imaginary.
With ME (and therefore PEM) people often became sicker after exertion seen as imagined. It would be a normal response from a body that was deconditioned. The subsequent reduction in the ability to exert himself would be part of kinesiophobia. The fact that exercise really made you sicker – or permanently deteriorated – was therefore a matter of a wrong perception. Although deconditioning is obviously not helpful, we already know from various studies that ME not by deconditioning is maintained.
Unfortunately, many still do not believe in PEM and we still see this with long COVID. That’s where the “between the ears” comes from. This study therefore certainly shows that PEM, regardless of whether the findings of the study explain PEM in its entirety or not, is not just “in our head”.
Psychological factors.
The wrong perception was seen as the cause of remaining ill. As far as I know, the fact that prolonged withdrawal from the labor process could cause psychological complaints is not seen as a primary maintaining factor. It is remarkable that no distinction is made between them and is mentioned as an example.
Fortunately, we are seeing more and more papers that do fit well with these types of diseases who instead of focusing on fatigue and graded activity/graded exercise, focus on PEM and pacing. These people also provide appropriate psychological support and are seen as helpful by patients.
I understand the good intentions of this response, but in my view it illustrates well how some doctors still understand little about these types of post-acute infectious diseases. This lack of insight may lead to incorrect and even harmful advice being given. I fear that this response could just as easily discourage people from participating in the treatments mentioned and do little to improve patient care. A missed opportunity.
