part 1 has been published on September 22, 2023 and can be read here
Likelihood of psychological harm also real
Besides physical harm, the likelihood of psychological harm is also real. Because CBT for CFS operates on a flawed theory, it fails to teach the patient to recognize and adequately interpret symptoms and bodily signals relevant to ME/CFS. Conversely, it is likely that the patient will learn (to an extent) to ignore and/or wrongly interpret these. This essentially teaches the patient to not trust their own ability to assess an essential part of themselves.
If the treatment does not yield the desired progress, chances are that the patient will unfairly hold themselves responsible because the protocol of CBT for CFS explicitly cultivates a positive expectation in which the amount of progress is to a significant degree a function of the patient’s efforts (Knoop & Bleijenberg, 2010; Geraghty et al., 2019). A patient will struggle to obtain professional, social and societal support if the narrative of the disease is wrong and it is assumed that the patient has control over their illness trajectory (Health Council, 2018). Harm from inappropriate treatment can also lead to medical trauma (van Hemert, 2021).
The application of a treatment in a patient group which carries a real risk of harm as a result of this treatment is, in our opinion, a violation of article 23 and 25 of the code of ethics. A dated treatment which inflicts harm damages trust in the psychologist and violates article 18 of the code of ethics. Article 14, 15 and 16 are also difficult to observe when acting on dated views.
2.3. Integrity
Entering into a professional relationship which may cause harm to the patient cannot comply with the basic principle of integrity. First of all, entering into such a relationship is not professional nor ethical, thus violating article 39 of the code of ethics. The psychologist will also set unrealistic expectations for the ME/CFS patient regarding the possibilities of improvement or recovery as well as the patient’s control over this (see paragraph 2.2). This is not in line with article 45 because it is diametrically opposed to the premise that ME/CFS is a severe, chronic multisystem disease for which no proven effective treatment exists (NICE, 2021a; CDC, 2021). The patient will be misled, which psychologists are supposed to avoid as per article 42.
2.4. Respect
As explained above, the ME/CFS patient treated with a CBT for CFS protocol will not be adequately taught to listen to their own bodily signals. This fails to teach the patient to adequately give words to what they are experiencing and to adequately manage their body and themselves. This constitutes autonomy deprivation instead of autonomy cultivation, causing the psychologist to violate article 59 of the code of ethics.
From the standpoint of dated views, it is plausible that the psychologist does not sufficiently respect the knowledge, insights, and experiences of the patient with regard to ME/CFS because the psychologist will label these (to a degree) as perpetuating factors instead of as a reality of the disease. This also includes the belief of the patient that there is a medical cause for the complaints, the experience of PEM, and the observation that the complaints increase with the CBT for CFS treatment. By inappropriately labeling these thoughts and experiences as perpetuating factors, article 56 is violated. Finally, a patient who experiences PEM will also feel inadequately supported by their psychologist who aims to correct these presumed perpetuating factors and does not recognize the signals of PEM. This violates article 57. Chances of violating article 65 are also real if the patient’s interpretation of their disease is labeled as a perpetuating factor.
Finally, article 63 outlines that the psychologist has to inform the patient, among other things, of the methods of assessment and treatment options, what can be expected and what are possible side effects or alternatives. As has been argued here in numerous ways: this is impossible when acting upon dated views.
3. Which psychological modality is appropriate for patients with ME/CFS?
Psychological treatment can be applied in ME/CFS as a tool to learn how to cope with this chronic illness. Psychological treatment is indicated when there are psychological factors that impede acceptance of the chronic illness, coping adequately with it, and remaining within one’s limits to avoid triggering PEM as a component of this coping (NICE, 2021; Biere-Rafi et al., 2023). In accordance with the NICE guideline for ME/CFS, we subscribe to the opinion that, for this to work, it is important that the patient learns to understand the disease and to recognize and interpret their own bodily signals. This will require a certain focus on the disease and its respective symptoms (especially at the onset).
4. Adaptation guideline for ME/CFS patients needed at short notice
The fact that we, as (former) practicing clinical psychologists, only found this information once we ourselves became ill, indicates a gap in information provision in this area. We deem it necessary, through writing, to bring attention to this. The Health Council made the following recommendations in its report on ME/CFS in 2018:
“Those responsible for training and continuing education of healthcare providers ensure that in training and education the serious, chronic multisystem disease ME/CFS and what caregivers can do for patients with this disease are addressed.” (Health Council, 2018, p.6).
To date, this does not seem to have sufficiently come to fruition. Subsequently, it is impossible for psychologists to be informed of the latest developments that allows them to comply with article 100 (maintaining and developing professional expertise) of the code of ethics for psychologists.
While the current CFS guideline for adults is set to be revised, the completion of this process has recently been postponed to 1 May 2026 at the latest. No date has been announced for a revised pediatric and adolescent guideline. Until further notice, psychologists will unfortunately continue to violate the code of ethics when they use CBT for CFS on ME/CFS patients. This is unacceptable for patients and for the respectability of the profession. For psychologists this situation can be damaging as well due to exposure to the risk of moral injury.
We would like to point out that the Dutch Society of General Practitioners took action in 2018 by withdrawing the CFS guideline from the database ‘Guidelines and practice’ on their website because they found it to not be compliant with the advice of the Health Council regarding the onset of the disease, the characterization, diagnostics and treatment. Unfortunately, no appropriate alternative has been found that ensures ME/CFS patients receive the healthcare they need. This has left patients in healthcare limbo. Our plea is that responsible parties provide an interim solution which is up to date with the state of the art.
M. Bloks (General Health Psychologist, not practicing because of ME/CFS), in association with B. Khouri (General Health Psychologist)
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Table of contents
The ME Global Chronicle 