Belgium's share of people on long term sick leave reaches record highs: 600k in a 11M population. Recently, a report leaked that claims up to 59% of those people are actually fit to work.
ME/CFS has come up in the margin. Last week,
Ruben Mersch used ME/CFS as an example of "illness without disease", but what I really want to share here is a
response from Boudewijn Van Houdenhove, a professor-psychiatrist. In this response, he defends the illness experience of ME/CFS patients, but also argues in favor of the biopsychosocial approach.
The article is paywalled and in Dutch. Some machine-translated snippets:
I learned that the “illness” aspect of those conditions — the suffering of the patients — is in any case genuine. It also became clear to me that many of them are confronted with misunderstanding, dismissal, and stigmatizing remarks.
In ME/CFS patients, there are indications that their immune system — often after an infection, prolonged stress, or a combination of both — remains stuck in a mildly activated state. This affects the brain and results in physical, mental, or emotional exertion triggering a flu-like feeling of malaise. Those underlying disease-related aspects presumably also play a role in burnout and long covid.
- I am not sure how "stuck in a mildly activated state" translates to biology but I suspect it's not very accurate. Could someone help me with this?
- The comparison to burnout, a phenomenon that resolves with rest and removal of a stressor, drags down the gravity of ME/CFS
- The "body stuck in state X" narrative has been used in the past to argue for GET, CBT, brain retraining and the like
- Prolonged stress as a trigger, I'm not sure about either (*)
As long as the disease mechanisms are not fully unraveled and treatable, rehabilitation remains the key concept, preferably as early as possible.
This, to me, gives the impression that the illness can be overcome if patients would just try hard enough. Perhaps in GET, CBT or 'pacing up'. False expectations, false hope.
Furthermore, I noticed that the stories I heard were often filled with accumulated physical and/or psychosocial problems. Traumatic experiences — including those from early childhood — were not uncommon.
Some more psychologisation through anecdotes. I'm pretty sure there is no good evidence for childhood trauma being more prevalent in MECFS than in other illnesses.
(*)
The discussion about people who are long-term “ill without disease” should not start from a distinction between illness and disease, but from a broad bio-psycho-social view of illness and health. Otherwise, those unfortunate people risk remaining the pariahs of our medical system.
The bio-, the psycho- and the social aspects of ME/CFS should get exactly the same ratio of attention as they do in cancer, diabetes or polio. But they don't. The psychologisation of MECFS under the guise of a BPS approach is a fundamental contributor to the "misunderstanding, dismissal, and stigmatizing" the author aims to address.
(*) I am searching for some discussions/conclusions/evidence on the relevance of childhood trauma and prolonged stress. I'll come back to update with my conclusions.
In the meantime, could anyone point me in the right direction?
www.openpetition.eu
