Following the NOS coverage of coercion and pressure regarding treatments with CBT/GET and the potential threat of intervention from Veilig Thuis for children with ME, the Association for Behavioral and Cognitive Therapies issued a response.
Their goal was to “take critical voices seriously and eliminate misunderstandings about CBT.”
https://www.vgct.nl/reactie-vgct-op-artikel-nos-over-behandeling-me-cvs/
But are they really doing that? Here is my response:
CBT studies, including the FITNET study, are based on people (in this case, children and adolescents) with CFS, where the symptom post-exertional malaise (PEM) is optional or even not a criterion. However, NOS, like the CDC, NICE, and the Health Council, bases its reporting on ME or ME/CFS—where PEM is a mandatory symptom. The referenced CBT studies do not specifically address ME or ME/CFS. Writing about ME/CFS in this manner is misleading. Even later analyses that included PEM do not provide clarity.
https://scibasejournals.org/neurology/1022.pdf
The VGCt states: “As VGCt, we advocate for a broad, integrative approach to persistent physical complaints.”
While many children recover spontaneously, a significant portion does not. Simply labeling chronic symptoms as ‘PPS’ (Persistent Physical Symptoms) because they might eventually resolve ignores the nature and severity of a chronic illness like ME. It also creates space for PEM to be seen as a treatable complaint when it is actually a core symptom of the condition. An analysis of the FITNET study for adolescents with CFS even suggests that the intervention may impede natural recovery.
https://www.mdpi.com/2076-328X/7/3/52
CBT for CFS was not developed as a supportive treatment but rather aimed at full recovery from “chronic fatigue” and possibly CFS itself. Presenting CBT as supportive is therefore misleading. I recommend the VGCt read this paper, which clearly explains the CBT model for CFS. That seems necessary:
https://journals.sagepub.com/doi/full/10.1177/2055102919838907
When patients are told that after an initial infection there is nothing physically wrong, and that fatigue or PEM stems from behavior or thoughts—such as kinesiophobia, deconditioning (or overprotective parents)—it effectively implies that patients are imagining their illness. Biomedical research—including from the Netherlands—has increasingly demonstrated that such claims are unfounded.
https://www.nature.com/articles/s41467-023-44432-3
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
The claim that CBT causes no harm is based on questionable assumptions. Deterioration is often insufficiently examined with measurement methods that could truly detect PEM and other relevant declines. This leads to an inaccurate picture of potential harm. Additionally, we regularly see in CBT studies on adults that there is an increased reliance on disability benefits, shorter work hours, low therapy adherence, and more dropout in the treatment group compared to the control group.
https://journals.sagepub.com/doi/full/10.1177/2055102919840614
The recently published replication study of the Dutch FITNET-NHS for adolescents also showed harm:
In the FITNET-NHS study, about 25% of participants in both groups showed signs of deterioration during the 12-month study period. Both groups followed programs with gradually increasing activity. However, 61 participants dropped out early in the intervention group, compared to just 12 in the control group. Additionally, 28 participants in FITNET reported one or more (serious) side effects, compared to 18 in the activity management group. Only 37.5% of the FITNET group completed 80% or more of the expected sessions, compared to 78% in the Activity Management group.
https://www.journalslibrary.nihr.ac.uk/hta/VLRW6701
The NKCV also claimed that CBT caused no harm. They were reprimanded by the Advertising Code Committee following this statement.
When deterioration occurs, CBT proponents never attribute it to the therapy but rather to disease fluctuations. Progress, however, is credited to CBT—even though objective data does not support this, and long-term results often show no difference between groups. In FITNET, the actometer—an objective measure of activity—was not published. The researchers later declared that no effect was measured. Bias, much?
It is no coincidence that NICE guidelines found behavioral intervention outcomes to be primarily of very low quality, including the FITNET papers by Nijhof et al.
https://www.mdpi.com/2076-328X/7/3/52
Gradually increasing activity is contraindicated for people with PEM. CBT for CFS was developed for people with (idiopathic) chronic fatigue, not for those with ME where PEM is central. Even cautious activity increase can lead to iatrogenic harm—especially as PEM often occurs 12 to 72 hours or later. This delay can cause both the practitioner and patient to overlook the damage until it is too late.
Pressure from healthcare unfortunately does occur. For example, see the Black Book with patient experiences and the survey on coercion and pressure. The claim by CBT therapists that they do not exert pressure does not account for other healthcare providers. Patients want to recover—and CBT pretends it can achieve this, reinforced by CBT therapists themselves. Pressure can have harmful consequences, even on a purely mental level.
https://me-cvsvereniging.nl/wp-content/uploads/2025/05/Zwartboek-CGT-en-GET-versie-29-mei.pdf
The VGCt writes:
“ME/CFS significantly limits the functioning and quality of life of affected youth. The VGCt wants to collaborate with pediatricians and patient associations to ensure more effective treatment for ME/CVS.”
That is a noble goal. But CBT, in its current form, is not an effective or safe treatment for ME/CFS—and may even be harmful. Why does the VGCt not advocate for treatment methods that patients with PEM can identify with? By failing to do so, the VGCt perpetuates iatrogenic harm and prevents progress toward better psychosocial support. Who benefits from this? Certainly not the patients. There are better options available:
https://docs.google.com/document/d/1BdbzgZ543rf15VXY7zhHpndgBl5yvHuOyc0bHqXFWC8/edit?usp=drivesdk
The current MUPS guidelines are not based on studies involving children with PEM. Waiting for new guidelines while harm continues is medically and ethically unacceptable.
The defensive stance of the VGCt—without any acknowledgment of the harm caused by CBT, the trauma resulting from pressure and coercion, or self-reflection—is troubling. It is completely unworthy of psychologists, psychiatrists, and psychotherapists. The VGCt clearly still has a long way to go…
