By David Tuller, DrPH
It began on May 30th with television, radio and online reports from Nederlandse Omroep Stichting (NOS), a major Dutch broadcasting organization. The package of stories focused on the potential harms of psycho-behavioral treatments for children with ME/CFS. In particular, it focused on the kind of cognitive behavior therapy (CBT, although rendered CGT in Dutch) offered to these patients, which also involves encouraging them to gradually increase their activity levels.
NOS health care editor Sander Zurhake was the reporter for the package, which triggered a detailed response and charges of inaccuracy from the Dutch Association for Pediatrics (NVK). The Association for Behavioral and Cognitive Therapies (VGCt) also issued a statement of concern. Zurhake offered robust rebuttals to these complaints (here and here).
Most recently, more than 100 doctors, psychologists and other health care providers released an open letter in support of Zurhake’s reporting. That letter, in turn, prompted another NOS report from Zurhake last week. Some of the letter-signers themselves have ME/CFS and/or Long Covid.
So let’s back up.
Zurhake’s May 30th package was a sharp challenge to the longstanding dominance in the Netherlands of the CBT/GET treatment approach for ME/CFS, which some clinicians have more recently promoted as appropriate for people with Long Covid. The NOS stories were prompted, at least in part, by the release of a survey from the country’s ME/CFS Association of families in which a child was suffering from ME/CFS or another post-acute infectious syndrome. According to the findings, parents had faced threats of child abuse after refusing to allow their kids to be treated with this approach.
Here’s the opening of the online version (via Google Translate, as are all the English-language statements quoted in this post) of the May 30th package:
“Children with ME/CFS, a chronic disease that is extremely exhausting, are offered a treatment in the Netherlands for which it is doubted whether there is any scientific basis. This is evident from an inventory by the NOS of international medical guidelines, scientific studies and the positions of medical advisory organizations and patient associations in the Netherlands.
“In the Netherlands, ME/CFS, a disease that is very similar to long covid, is treated with cognitive behavioral therapy. This therapy teaches children with ME/CFS to ignore warning signals when the body tells them to take it easy, for example because an effort is too great.
“This approach assumes that ME/CFS is not maintained by physical causes, but by misleading thoughts that make the patient believe that he or she is exhausted. Working on fitness while ignoring signs of fatigue is an important part of this treatment method.
“However, it does happen that children who ignore signs of exhaustion physically collapse, which worsens their symptoms. Some even become dependent on a wheelchair.”
The NVK, in a somewhat incoherent bill of particulars posted on its website, assailed NOS for purportedly misrepresenting the state of the science, among other alleged faults. As happens with members of the CBT/GET ideological brigades, the group comes across as a bit shell-shocked at having its expertise questioned. The members apparently understand that they are no longer in full control of the narrative around this illness—and they seem to find this new reality unsettling.
In his blistering response, Zurhake effectively dismissed all of NVK’s arguments. As he wrote:
“Given the abundance of well-founded criticism of CGT/GET, it is truly a mystery to me why the NVK finds it ‘incorrect’ that the NOS states that there is ‘doubt’ about the scientific basis. Because ‘doubt’ is actually a very mild formulation if you look at other guidelines where CGT/ GET is explicitly discouraged.”
He further noted: “My editors and I experienced strong pressure from the NVK not to publish or broadcast this story. We therefore had multiple sessions to double-check my research and source material. In short, we did not rush into this story…We also offered the NVK the opportunity to express and explain their vision in front of the camera until the very last moment. In vain.”
Zurhake took a similarly blunt approach to the misguided statement from the VGCt:
“The statement by the Association for Behavioural and Cognitive Therapies in response to the NOS article on the use of cognitive behavioural therapy in young people with ME/CFS raises serious questions about scientific consistency, professional integrity and the learning capacity of the association. While the statement at first glance gives the impression of careful communication, a closer look reveals a disturbing lack of connection with international biomedical insights, structural scientific criticism and reports of damage.”
In the next phase of the brouhaha, the open letter from health care professionals called on pediatricians and therapists to stop recommending the psycho-behavioral treatments. For Zurhake, that presented another opportunity to chide the NVK and the VGCt for their outdated views of the matter. As he noted in the piece last Thursday:
“The letter writers believe that the Dutch Association for Pediatrics and the Association for Behavioral and Cognitive Therapies should adjust the treatment guidelines for patients with ME/CFS based on current science…
“Partly due to long covid, a disease that is very similar to ME/CFS, it is clear that the complaints do indeed have a physical cause. But where important British and American scientific committees concluded years ago that there is no scientific basis that proves that this treatment method is effective, people in the Netherlands are sticking to this therapy.”
When journalists and media organizations go up against powerful medical interests, it is critical that they are able to back everything up. Zurhake has done his homework here. To anyone following the exchange, he clearly has the winning hand. (That is presuming Google Translate has been reasonably reliable.)
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