An interesting column inTrouw by physician Bert Keizer about the post-acute infectious syndrome (PAIS) continuing education course he recently attended. Although he clearly picked up what was necessary, his piece unfortunately also contains many serious errors.
He writes:
“Two weeks before the demonstration at the Malieveld I went to a continuing education course on PAIS = Post-Acute Infectious Syndromes. Also known as ME/CFS. […] It concerns long-lasting, disabling illness following an infection by a virus, bacterium, or parasite. Think of: long covid, post covid, Q fever, Lyme disease, post-sepsis syndrome.”
ME is considered one of the PAIS. Some of the triggers mentioned can provoke ME, but not everyone develops ME. In addition, ME is not always caused by a clearly identifiable infection. So ME and PAIS are not automatically the same.
He further writes:
“Patients may, among other things, suffer from POTS = Postural Orthostatic Tachycardia Syndrome. That is to say: when you stand upright your heart starts to beat unpleasantly fast.”
However, POTS is much more than a heart that beats unpleasantly fast.
Johns Hopkins writes:
“The symptoms of POTS include but are not limited to lightheadedness (occasionally with fainting), difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea.”
An interesting recent publication on POTS and the role of psychiatry, with of course also a link to PAIS is worth reading as well.
About PEM he writes:
“That is a worsening of symptoms after often minimal physical or emotional exertion. It does not always strike immediately, but only 12 or 48 hours later.”
However, PEM is also triggered by cognitive exertion. Chu et al. 2018 write:
“One hundred and twenty-nine subjects (90%) experienced PEM with both physical and cognitive exertion and emotional distress.”
About patient numbers he writes:
“It concerns approximately 90,000 patients, a shocking number.”
This figure concerns long covid patients who are severely limited. In total it is estimated that there are about 450,000 long covid patients. That number therefore does not refer to ME and also not to PAIS in general. Including the other PAIS, there will be many more.
“Yes, because that general practitioner cannot find anything.”
With standard tests at the GP you indeed find little, but advanced tests in a research setting do show abnormalities.
“Is there then no psychological explanation?”
In ME, other conditions that could primarily explain the symptoms must first be excluded before the diagnosis is made. This also applies to psychological and psychiatric disorders.
He continues:
“One of the most striking aspects of this disease picture is the intensity with which a possible psychological component is contested by a considerable part of the sufferers.”
From Chu et al. 2018:
“Contrary to some sources which have intimated that patients affected by ME/CFS are reluctant to admit the role of psychological or emotional factors in their illness and cling unreasonably to a biological cause for their condition [43–45], our clinical experience, supported by this study’s results, is that patients readily discuss such factors when their illness experiences are validated.”
It is not contested that a psychological component can also be part of being ill. This also applies to many other medical diseases. The prevalence of psychiatric comorbidity in ME and other PAIS is, however, comparable to that in, for example, MS and rheumatism. A quarter of patients have a psychiatric comorbidity, but the majority do not. (1, 2)
In MS and rheumatism we also do not devote continuous attention to this. That did happen in the past, at a time when we could not yet properly diagnose, objectify, or treat those diseases. Mr. Keizer seems to be repeating that mistake once again in 2025, but now with PAIS, despite the fact that this view is obsolete.
Even without biomedical findings, the pattern of ME does not fit psychiatric or psychological disorders.
This is mainly contested in order to prevent iatrogenic harm. History shows that incorrect, activating forms of psychotherapy have been harmful. Psychological support can certainly be supportive for some, but then the form of therapy must actually match the disease picture. These publications show that it is possible.
“This rejection of psychiatric evaluation casually contains a derogatory characterization of mental illness. It essentially says: we are really not crazy, we truly have something. As if psychological issues immediately push you down to a lower level of being human.”
Stating that PAIS is not a psychological disorder also does not imply that one condition is more or less serious than another. It means that they involve different disease processes and therefore must also be treated differently. That is important when we treat diseases with medication, but also when we want to use psychotherapy.
He states:
“The somatic physician remains, so far in vain, rummaging around in the cells.”
Rummaging around in cells is not necessary. POTS, orthostatic intolerance, and PEM can now be properly recognized with sufficient knowledge and even partly objectified. (1, 2)
“The psychiatrist then? No, they would rather not interfere with it at all.”
If indicated, a psychiatric assessment is of course not avoided.
Finally:
“Incidentally, the most important lesson of the refresher course was: if there is no diagnosis, that does not mean there is no suffering.”
PAIS encompasses several recognizable diagnoses. No diagnosis therefore does not apply.
I appreciate it when a physician undertakes continuing education, but it may be wise to first thoroughly review and actually understand the training before writing about it in a column in Trouw.
Incorrect framing is not only painful and harmful for patients, but also quite an embarrassment for Mr. Keizer. Perhaps next time pay a bit more attention?
