An important step has been taken in the research into the causes of Long COVID and in particular the frequently heard complaint of post-exertional malaise (PEM), the extreme exhaustion after emotional, cognitive or physical exertion. Researchers from the Amsterdam UMC and the Vrije Universiteit Amsterdam discovered through research into blood and muscle tissue that damage occurs at the cellular level and in the muscle tissue itself after a maximal cycling test.
This investigation gives many hope, because it provides more insight into post-exertional malaise (PEM) in Long COVID. It shows that in some post-COVID patients, damage occurs in the muscles at the cellular level after intensive exercise. Although the researchers advise post-COVID patients with PEM to be careful with heavy exercise, they do advise patients to keep moving within their own individual limits and possibilities.
Unfortunately, this new research does not mean that there is a treatment for PEM. More research is needed for that. C-support will therefore continue to follow this research and if more information is available, we will share it on our website.
Question and answer
PEM stands for Post Exertional Malaise, which refers to an aggravation of complaints after (over)exertion. Complaints can arise acutely or develop 12-48 hours after physical, cognitive and/or emotional exertion. These complaints can last for days or in some cases weeks. The development of the complaints a considerable time after the exertion is very characteristic of PEM. View the factsheet about PEM containing more information.
There is a PEMcheck available. This recognized self-test gives an indication (not a diagnosis) whether there is reason to look further into the exercise intolerance. Please note: The Fatigue Clinic has translated the NIH/CDC DePaul Symptom Questionnaire (DSQ) and digitized the 5 additional questions on PEM (DSQ-5) for ease of use. Once completed, it leads to promoting their own institution.
There is also one in October 2023 research published on Exercise intolerance and post-exertional malaise in patients with post-COVID syndrome.
PEM is a clinical diagnosis, which means that the diagnosis can be made by your own experience. If you experience worsening of your complaints after mental or physical exertion, then it is possible that you have PEM. At the moment, the muscle biopsy tests and the specific blood tests from the research are only available in the context of scientific research and not within regular patient care.
There is currently no study that patients can sign up for.
Currently, there is no treatment available for PEM. However, pacing can be used to support daily activities.
Pacing is performing an activity at a calm pace and carefully alternating this with a rest period. It is important to stay within individual limits and to perform activities in such a way that no complaints arise. In this way, someone can remain active within his or her own limits. Pacing can be applied to daily physical activities and activities that require concentration. Pacing can help prevent PEM and therefore worsening of complaints.
Healthcare professionals, particularly occupational therapists, physiotherapists and rehabilitation physicians, can use pacing to provide patients with insight into the balance between their potential load and load capacity.
This is not possible. We work as much as possible with all researchers working on this subject in the Netherlands and try to bring PEM to the attention of all professionals involved in the care of post-COVID patients.
