Different CBT in Behavioural Therapy?
Clinical psychologists and cognitive behavioral therapists Klaas Huijbregts and Luuk Stronk wrote an interesting yet critical piece the journal Behavioural Therapy (Gedragstherapie) about the current way in which “ME/CFS” patients are treated through a rigid adherence to a protocolled form of cognitive behavioral therapy (CBT). They argue that this goes against the principles of CBT and that this form of CBT more often leads to iatrogenic harm.
In 2021, Klaas Huijbregts, together with colleague Michel Reinders, had already written an article in the NTVG about CBT for “ME/CFS”, which, to put it mildly, I was not at all pleased with. I will not go into that again in detail. For those who are interested, it can be read again here.
Fortunately, the current piece in the journal Gedragstherapie is already much better. Whereas Huijbregts previously wrote with great astonishment about the negative attitude toward CBT, and tried to straighten out several things that were fundamentally flawed, this new article suggests that, with growing insight, a few more pieces of the puzzle have fallen into place.
I recently argued that researchers, healthcare providers and journalists should work and write not about but with people who have lived experience, because the lack of experiential knowledge around ME has led to misconceptions and harmful behavioral interventions such as CBT with graded activity. Huijbregts’ piece also lacks that input and therefore contains factual errors; despite some positive elements, that is a missed opportunity in such a complex matter.
Because these points regularly lead to misunderstandings and unnecessary discussions, I go through them chronologically below and give my comments on each one.
A bad rep
Huijbregts et al. point to the well‑known history of post‑viral illnesses and the predictability of a wave of long covid cases. They describe their surprise that the media focused mainly on biomedical research, while CBT, according to Price et al. (2008), had once been presented as effective for “ME/CFS”. They also refer to the Q fever epidemic.
The surprise expressed by Huijbregts et al., which they initially felt and which was also visible in the earlier NTVG article, is I think what many psychologists and psychiatrists with too little knowledge about ME will experience. It is good that they describe this.
What should be added to the reference to the 2008 CBT Cochrane review by Price et al. is that none of the studies showed any objective improvement.
It is also important to mention that CBT for Q fever fatigue syndrome (QFS) likewise showed no objective improvement and that the effects had disappeared within a year.
The AHRQ revised its initially positive assessment of CBT and Graded Exercise Therapy (GET) as early as 2016. The CDC removed its recommendations for CBT and GET from its website years ago. The Dutch Health Council (2018), the Belgian Superior Health Council (2020) and the NICE guidelines (draft 2020) have all distanced themselves from GET. They have also adjusted and weakened their advice on CBT, and now all recommend pacing instead of GET.
The Dutch study by Kuut et al. (2023), which examined CBT for long covid at a later stage, also showed no objective improvement. This was not stated in the publication itself, but was only acknowledged later in the subsequent correspondence.
So these were already several reasons why CBT was less appealing than the authors, and probably many CBT therapists along with them, might have expected.
Of course, it may seem positive when people report subjective improvement, but it is not that simple. I will return to that later.
CBT for CFS
The article incorrectly uses the term ME/CFS for patients included in CBT research, even though CBT was developed and tested exclusively in CFS populations in which PEM was optional or even absent (Oxford, see also the PACE trial, Fukuda). For ME and ME/CFS, PEM, or becoming sicker after trivial exertion, is mandatory and appears historically in multiple terms and definitions.
The fact that ME was once reduced to (chronic) fatigue (syndrome), with PEM being ignored, has caused the patient community, which was barely heard, including by psychology, a great deal of iatrogenic harm.
Although patients did participate in studies, CBT studies are therefore not really about ME or ME/CFS, but about CFS. People with ME or ME/CFS always meet the CFS criteria, but people with CFS do not always meet the ME or ME/CFS criteria.
As a result, these studies do not represent the ME/CFS population well, and people with PEM may respond differently to treatment. The NICE guideline review therefore in part downgraded the strength of the evidence due to indirectness. Other reviews made the same distinction.
That is why I refer to CBT for CFS in the rest of the article. Using ME/CFS in this context is confusing and incorrect, and even later analyses that attempt to claim that CBT works for ME/CFS, and therefore with mandatory PEM, also show no objective improvement.
PEM
Unfortunately, the description of PEM is, just like in 2021, incorrect.
Back then they wrote: “Patients recover extremely slowly from exertion.”
Now they write: “Patients need a lot of time to recover from even light exertion, the so‑called ‘post‑exertional malaise’ (PEM).”
In 2021 I already pointed out that this is not accurate and that people become sicker after very minimal exertion.
Since the CDC is again used as a source: the website states, “People with ME/CFS experience a worsening of their symptoms after any type of activity, physical or mental. These activities wouldn’t have been a problem before they became ill. This is called Post-Exertional Malaise (PEM).”
So it concerns a worsening of symptoms. What the CDC does not mention is that this often occurs with a delay of up to about 72 hours, that it is accompanied by loss of strength and/or loss of function, and that it can also lead to permanent deterioration. In addition, recovery is slow, but that is not the only or primary problem.
Health Council
Huijbregts et al. refer to the “remarkable” statement by the Health Council in 2018:
“CBT should not be regarded as a medically adequate treatment to which patients can be compelled” (Health Council, 2018).
Given the lack of (objective) evidence and the potential iatrogenic harm caused by increasing activity levels, the Health Council issued this justified statement because patients are sometimes forced to undergo such treatments in order to qualify for disability benefits or other social support eventhough CBT and GET leads to more disability benifits.
Huijbregts et al. also write: “Some patients are confined to bed and can hardly tolerate any stimuli.”
It is very good that severe ME is acknowledged. It is important to note that there are different degrees of severity, and that the Health Council states that there is no evidence for CBT in severe forms of “ME/CFS”, because this group has never been successfully studied at all.
I still often hear that people with severe ME are offered CBT or GET or even pressured into it “because it is effective for ME or CFS”. I myself was recently told this by an insurance physician at Argonaut. That is unfounded.
CBT model
Huijbregts et al. describe that CBT for CFS generally involves a protocolled approach in which activity levels are gradually increased, based on the idea that fatigue is the result of deconditioning and not of a physical illness.
This last point certainly plays a role, but sometimes it concerns kinesiophobia or fear of movement. Correcting this fear of movement is, in some models, also part of the underlying rationale for increasing activity. The goal is then to regain confidence in physical exertion. The increase in symptoms was viewed as a normal reaction to being deconditioned and not as the result of an underlying disease. Huijbregts et al. address this in part, but do not state it explicitly:
“The step by step buildup of activities can therefore be seen as a behavioral experiment through which the assumption that the body cannot tolerate an increase in activity may be disproven. What is appealing about a behavioral experiment is that there is something at stake. Such a bet could be phrased as: ‘Bet that I will start to feel better if I walk a little longer every day?’”
They also refer to Wessely and Powell (1989), who present CFS as a condition with high psychiatric comorbidity and somatic attributions, which according to this theory should be corrected through graded activity.
The section on Wessely is interesting and shows how the symptoms of ME were misinterpreted or rather distorted and psychologized. However, we saw this in the Netherlands as well with the Vercoulen model. The Netherlands was, together with the United Kingdom, a frontrunner in unnecessarily reducing ME and post acute infectious syndromes (PAIS) to a model of behavior and beliefs.
The researchers believed that patients were overly focused on their physical limitations, attributed their symptoms to somatic causes, and were insufficiently motivated for physical activity or recovery, after which they subsequently deteriorated.
Psychologists at DePaul University attempted to replicate Vercoulen’s research and tested that model with five groups: patients who met the criteria for CFS, psychiatrically explained chronic fatigue, medically explained chronic fatigue, unexplained chronic fatigue, and patients with fatigue related to drug abuse. The Vercoulen model was successfully replicated for patients whose fatigue was explained by psychiatric disorders, but not for patients with CFS. This model was therefore not based on patients with CFS, let alone ME.
These hypotheses and views are therefore unproven even for CFS. That they nevertheless formed the basis for CBT for CFS, and that CBT for CFS became the preferred treatment for CFS and thus also for ME, despite repeated protests from the ME community, has also been a major disgrace.
In addition, even if subjective improvement is achieved, one must ask how beneficial this is for a person’s well being if it is based on false assumptions. Teaching someone to deny and distort their reality can have far reaching physical and mental consequences. We also see this partly reflected in the high numbers of suicide and euthanasia. Suicidal thoughts themselves do not appear to be necessarily linked to clinical depression.
Harm
“However, many patients did not experience it as an experiment in which the outcome could also be that they would feel worse rather than better because of the graded activity.”
This is an important point. Iatrogenic harm is usually not well reported or warned about. In fact, it is often denied. The Dutch Knowledge Centre for Chronic Fatigue (NKCV), where CBT for CFS is most extensively researched, promoted and provided, was also guilty of this on their website, among other places. They were reprimanded for this by the Advertising Code Committee.
Huijbregts et al. refer to Heins et al. (2010), who found that deterioration during graded activity occurred just as often as in the control group, but they point out that NICE now explicitly distances itself from graded activity in the context of PEM.
Regarding the harmfulness and side effects of CBT and GET, there are already quite a few surveys showing that patients do indeed deteriorate from these therapies, but there are very few studies that properly map out this troubling aspect of CBT and GET. Nevertheless, there are clear direct and indirect negative consequences of graded activity visible in the scientific literature, including an increased reliance on disability benefits, reduced working hours, low treatment adherence and higher dropout rates in the treatment arm compared to the control group.
In the NTVG article by Huijbregts, harmful effects of CBT were unfortunately still justified using the study by Heins and colleagues (2010). This time they were thankfully more critical. What I pointed out in my response to Huijbregts back then was that one of the studies in that analysis had also been included in the Cochrane review. In the study by Prins et al. (2001), the dropout rate was 40.9 percent (CBT) and 23.1 percent (no treatment). This aligns with the trend seen in other CBT studies in the Cochrane review and elsewhere. If you do not count those results, a more positive CBT outcome is not surprising.
All published studies in the Cochrane review also had substantial dropout, missing data, asymmetrically distributed (more in the treatment group than in the control group), or were methodologically problematic.
The three RCTs analyzed by Heins et al. also contained a lot of missing data. In all three, in my view, the amount of missing data makes reliable safety conclusions impossible.
Apart from the NICE review, which found the outcomes of the CBT/GET studies to be mostly of very low quality, a survey commissioned by NICE was carried out with about 2000 respondents. It found that the majority of people experienced harm from CBT/GET.
Huijbregts et al. write: “It is also a fact that the trust of many patients in CBT with graded activity has been severely damaged.”
And rightly so. CBT with graded activity should not be prescribed to people with PEM. The problem, however, is not only CBT with graded activity, but also the incorrect interpretation of biological and psychosocial factors and the overestimation of the effect of psychotherapy as a whole. In my view, we see the latter in many other medical conditions as well.
Monkey Business
Huijbregts et al. briefly refer to the PACE trial (2011), the subsequent criticism, and the fact that the raw data were made public in 2016, after which trust in the results was not restored because of deviations from the pre-specified protocol.
For those unfamiliar with this: when the outcomes of the PACE trial were recalculated according to the original, pre-specified protocol, the spectacular claims about CBT and GET collapsed. Participants who entered the study with scores of only 60 (physical function) and 30 (fatigue) were counted as “recovered,” even if they deteriorated. The post-hoc deviation from the published protocol artificially inflated the results.
The independent reanalysis also showed that the recovery rates according to the original protocol dropped from the published 22 percent to only 4 and 7 percent, with no meaningful difference between CBT, GET and the control group. In other words, once you correct the calculations, the treatments do not work.
Just as with the reference to the CBT model of Wessely and Powell (1989), Huijbregts et al. interestingly refer only to foreign examples, but we saw that similar methodological tricks were used in the Dutch FITNET study by Nijhof et al. in adolescents with CFS.
The recovery criteria in the FITNET study were established only post-hoc, after the researchers had seen the data. This approach increased the risk of bias and led to very broad recovery criteria, allowing even severely fatigued participants to be classified as recovered.
The trial was unbalanced, relied entirely on subjective questionnaires, and the objective actometer data were not published. The researchers later stated that no effect was measured there either.
Interestingly, even the authors of the PACE trial stumbled over this. David Tuller, DrPH, writes about it: “In a Lancet commentary in which they praised the Dutch study, two of them called the recovery criteria ‘liberal’ and ‘not stringent’. In reality, only 36 percent recovered under a more modest definition of recovery, but the FITNET authors hid this finding in an appendix and the FITNET-NHS protocol by Crawley made no mention of it.”
Despite these bias‑increasing choices, FITNET found no long‑term difference between internet‑CBT and usual care. The recovery rates were comparable to, or even worse than, the rates for spontaneous recovery described in the literature. This shows that FITNET provides no evidence that internet‑CBT is effective for CFS in adolescents and may even have hindered recovery.
The studies by Nijhof were also part of the extensive review underlying the NICE guidelines, in which the outcomes were mostly rated as very low quality. In total, there were 9 studies from the Netherlands.
The supposedly “successful” results were therefore not replicated in the FITNET‑NHS trial by Crawley et al. (2024). About 25 percent of both groups also showed signs of deterioration during the twelve‑month study period. FITNET was time‑contingent and the control group was symptom‑contingent. A total of 61 participants discontinued the intervention prematurely, compared with 12 in the control group. In addition, 28 participants in the FITNET group reported one or more (serious) adverse events, compared with 18 in the Activity Management group. Only 37.5 percent of the FITNET‑NHS group completed 80 percent or more of the expected modules or sessions, compared with 78 percent in the Activity Management group.
Retraumatizing
Huijbregts et al. emphasize that patients must be free to refuse a treatment and that downplaying symptoms or psychologizing physical signals can be retraumatizing and can lead to avoidance of psychotherapy.
I fully agree with this. Unfortunately, this is still how many patients are approached. CBT/GET, but also other forms of psychotherapy, often retraumatize PAIS patients because they do not align with the actual disease presentation. As a result, people indeed start avoiding psychosocial care. That urgently needs to change.
Protocol
Huijbregts et al. stress that a good therapeutic relationship is crucial in “ME/CFS” and that protocolled CBT often falls short in terms of tailoring and collaboration. They also refer to the recent response from the VGCt, which claims that CBT for “ME/CFS” offers tailoring and collaboration.
The “tailoring” described in the VGCt response still seemed to consist mainly of graded activity. That explains why this is disappointing in practice. It is therefore not genuine alignment with the patient. See also my response to the VGCt.
They state that CBT for “ME/CFS” should, according to the standard, be based on a strong therapeutic relationship, case conceptualization and shared decision making, and that rigid use of protocols undermines this foundation.
However, I do not think that rigid adherence to a protocol is the core problem. The problem arises when a protocol is based on unfounded assumptions that ignore the biology of ME and distort psychosocial factors. When a protocol does not based on fatigue, graded activity and psychosocial factors as primary maintaining factors, but instead on the biology, PEM and pacing, without any form of graded activity, and focuses on acceptance and grief, with coping and pacing at the center, it can indeed be rigid. In that case, it actually aligns with the illness. The CBT model for CFS does not do this and is therefore unsuitable. The problem is not the rigidity or too much focus on one protocol, but the assumptions on which it is based.
A positive aspect is that the article clearly emphasizes tailoring, collaboration and recognition of PEM, and that it distances itself from rigid adherence to graded activity based protocols that have harmed many patients.
At the same time, graded activity remains open as a possibility, even though PEM biomedically rules this out. Case conceptualization does not change that contraindication, but still implicitly leaves graded activity as an option, which is not safe for ME with PEM.
On top of that, patients themselves do not always have insight into their limits, or may temporarily increase activity out of frustration, hope or adrenaline, only to crash severely afterward. This is precisely why a clear and even rigid adherence to a protocol that excludes graded activity is essential, and why a case conceptualization that leaves the graded activity door slightly open is not helpful.
Clinical picture
Huijbregts et al. argue that the treatment of “ME/CFS” requires tailoring because much is still unknown, although the importance of PEM is becoming increasingly clear.
Although too little is known about the precise cause of ME, we do know a great deal about the clinical picture. There are sufficient tools to determine what is and is not appropriate in treatment.
Orthostatic intolerance, for example, is also a well known problem, and within CBT for CFS patients are often told that they should not rest lying down or only minimally between activities. Even without graded activity, this alone can lead to a crash.
In my view, it is therefore more important to emphasize what we do know, rather than focusing on what we do not know, so that clinicians are well informed about the risks and boundaries associated with ME. We already know more than just PEM as an important part of the illness.
Graded Activity
Huijbregts et al. state that when graded activity is chosen, behavioral experiments should be used openly, and that if these fail, one should switch to adaptive pacing, which they link to Jason’s Energy Envelope Theory.
In the previous article in the NTVG, Huijbregts already referred to adaptive pacing, and in this article they connect it to Leonard Jason’s Energy Envelope Theory (EET). However, that is not correct. In this publication, Jason explicitly distinguishes between pacing and adaptive pacing therapy.
In the publication that Huijbregts et al. themselves now refer to, Jason explicitly states: “It is unclear, however, how these researchers developed the rule of never going beyond 70% of a person’s perceived energy limit, which would not be compatible with the Energy Envelope Theory.”
The Energy Envelope Theory is therefore not the same as adaptive pacing therapy.
As specialist psychotherapist Bettina Grande already points out, graded activity is simply contraindicated for PEM. So in my view, graded activity should never be chosen. It is better to use something like the EET. In that model, activity is only expanded when good pacing leads to a larger energy envelope and actual improvement in health. In that case, a person can automatically do more, without graded activity being involved. Expanding what someone can already do and activating through graded activity are two fundamentally different concepts.
Although graded activity sometimes goes well, we know that many people do not recover from PEM. For example, the study by Holtzman et al. (2019) showed that about 67.1 percent of patients had experienced a crash from which they never fully recovered. That risk should not be part of a treatment. Primum non nocere.
The behavioral experiment proposed by Huijbregts to try graded activity in some patients can therefore have disastrous consequences. Lasting iatrogenic harm can be prevented by choosing pacing without any form of graded activity and only expanding when there is demonstrable improvement in health, a larger energy envelope and the actual ability to do more. The proposed behavioral experiments are therefore unnecessarily risky and not an appropriate treatment strategy. The absence of a focus on graded activity does not mean that someone will never be able to do more again.
NICE
Huijbregts et al. state that CBT for “ME/CFS” can often better focus on acceptance and comorbid symptoms than on recovery from the illness itself, in line with the NICE guideline, and they advise the VGCt to adopt this approach while awaiting a new Dutch guideline.
It is good that the authors call on the VGCt to follow the NICE guidelines. The most important message from NICE, however, is that CBT is no longer seen as curative but as supportive. That is an important step in my view and also aligns well with the work of Grande et al.
At the same time, it is concerning that the Dutch guideline committee includes several outspoken CBT (for CFS) and GET proponents and researchers, which makes it likely that these interventions will be promoted again.
Given the gap between their work, patient experiences and international scientific developments, it is essential that the voice of the patient community as end consumers carries more weight so that we do not end up on the wrong track again.
Holding on to a treatment that most patients avoid has no added value and, as the authors themselves indicate, even contributes to people avoiding psychotherapy altogether. The substantial subsidies that have been invested in CBT for CFS without success have not only slowed progress in biomedical research but also hindered the development of appropriate psychosocial support. Let us not repeat the same mistakes.
So I do not think the outcome of the new guidelines should necessarily determine how we treat people with CBT. The authors seem to partly agree with this.
Flexible
They state that a guideline is not the most important thing, and that CBT for ME/CFS can gain meaning mainly by moving away from rigid protocols, working relationally and recovery oriented, and basing behavioral experiments on testable hypotheses, so that guideline and experience can meet.
I appreciate that they call for working more flexibly. However, a more relational or recovery oriented attitude does not change the fact that the intervention is based on a flawed theoretical framework. A behavioral experiment remains problematic when the underlying hypothesis is incorrect, because the patient is then encouraged to test a hypothesis that contradicts the biology of the illness and may even lead to deterioration.
On top of that, terms like functional recovery give too optimistic an impression to me. Talking about recovery quickly suggests that CBT is being positioned as a recovery therapy, while that is neither realistic nor appropriate for ME. It may play a role that NICE speaks of “improve their function.” In my view, NICE could have formulated that more carefully and cautiously.
Treatment should instead focus much more on acceptance, grief and comorbidities. Coping and pacing are the most important elements, as described for example in the article by Grande et al.
Trust in CBT cannot be restored by making the protocol more flexible or by emphasizing the therapeutic relationship. It can only be restored when the model itself is revised and aligned with the biology of ME, with PEM, energy management and pacing at the center. Without that substantive correction, any form of CBT, no matter how relational or “humane” it is presented, remains conceptually unsuitable for this patient group.
As a former professional athlete, I have also never understood why psychologists have been given such a prominent role in guiding physical activity in an illness like ME. In my view, a psychologist is not the appropriate expert to monitor physical limits. That role belongs to a sports physician, physiotherapist or occupational therapist with up to date knowledge of PEM and pacing. Fortunately, this is happening more often.
This article still seems to assign too large a role to the psychologist, while they should actually step back more when it comes to the physical domain. It also raises the question of when a psychologist is indicated.
If it is purely about pacing, a patient is better off seeing an occupational therapist with knowledge of PEM and pacing. When it comes to really discussing feelings of sadness, grief or existential themes, a psychologist or psychotherapist is of course more suitable.
Learning?
“Interestingly enough, this message has been voiced since 2011 (Twisk & Maes, 2011). For a field based on learning theory principles, we sometimes seem not very capable of learning ourselves.”
I definitely agree with this, and I can only hope that change will come as soon as possible.
Conclusion:
The article by Huijbregts and colleagues represents a step forward. They distance themselves from rigid CBT protocols, acknowledge iatrogenic harm, describe the problematic history of graded activity and emphasize the importance of PEM and pacing. They also acknowledge that patients have not been heard for many years. For Dutch standards, especially in the journal *Gedragstherapie*, this is a significant improvement.
At the same time, their analysis remains limited in certain areas. The problem seems to be partly framed as rigid adherence to a protocolled form of CBT and poor communication, but that is not the core issue.
International guidelines have now abandoned CBT and GET or significantly weakened their recommendations as treatments for CFS, not because these interventions were carried out incorrectly, but because they are based on a flawed assumption about the nature of the illness. These are unproven hypotheses that have never fit an illness characterized by PEM, that contribute to iatrogenic harm and for which no objective evidence exists.
A rigid protocol can work perfectly well, as long as it aligns closely with the illness. With CBT for CFS, that is not the case. In contrast, Grande et al. show what safe and appropriate psychotherapy for ME and PAIS looks like, without graded activity. Pacing and the EET are by definition flexible and individually tailored. In such a context, carefully or even “rigidly” following an appropriate but flexible protocol does work, and in doing so, prevents harm.
Although it is good that there is a focus on support, pacing, coping and treating comorbidities, it still seems that psychologists may continue to play too central a role in directing physical exertion and recovery. In my view, the role of the psychologist in this area is overestimated. CBT can at most be supportive in coping with a chronic biomedical illness, not serve as a recovery therapy.
The idea that graded activity can sometimes be a neutral experiment can also have disastrous consequences. It is a dangerous approach and should be abandoned entirely.
Without fully distancing themselves from the CBT‑for‑CFS foundation, calls for tailoring or relationship‑oriented CBT remain cosmetic. The core issue is that CBT for CFS is unsuitable and potentially unsafe for ME, where PEM is the central symptom. Graded activity is contraindicated in PEM. This is not a subtle distinction, but a paradigm shift.
It is good that the authors call for following the NICE guidelines and thereby distance themselves from CBT with graded activity and criticize the models on which CBT for CFS is based, yet they still do not fully dare to let go of it. The problems are partly attributed to implementation, communication and rigid protocol use, while graded activity is still sometimes considered.
It is unclear to me whether the authors still want to hold on to certain aspects of CBT for CFS, or whether they support international developments but are not yet ready to change course abruptly and completely. We also see this caution reflected in the fact that they refer only to problematic literature from abroad, while the situation in the Netherlands is not much better. It may play a role that this article appeared in a journal of the VGCt, and that they therefore try to present the message cautiously.
I can partly understand that caution, but I think it results in not quite conveying the right message. Unfortunately, that still stands in the way of truly appropriate care.
Although the article speaks about epistemic imbalance, the consequences of that could have been drawn more explicitly. Experiential expertise should have been leading in the design of care. I consider it a missed opportunity that, as far as I know, no psychologists or psychiatrists with lived experience were involved in this publication. As a result, the article misses the mark in certain areas. Given the sensitive nature of the topic and the place of publication, that is unfortunate and a missed opportunity.
What the authors rightly point out is that many people with a PAIS avoid psychosocial care altogether because of the history surrounding CBT and GET. I myself have had four negative experiences with psychologists I consulted. At some point you simply stop trying. Only one of those experiences involved CBT for CFS, which shows that psychology falls short on a much broader level.
What is needed is better education about what ME and PAIS are, complete abandonment of CBT for CFS, and replacement with psychotherapy such as that described by Grande et al. Psychologists and psychiatrists with lived experience must be structurally and equally involved in psychosocial care development, research, funding and publications, so that we do not repeat the same mistakes in psychosocial care.
Still, the article does create space for change within psychology, and that is an important step in the right direction, but only if people are willing to go beyond polishing old models. What is needed is a fundamental reorientation:
- ME is not a fatigue disorder, but an illness with PEM at its core.
- Graded activity is contraindicated.
- Pacing and energy envelope approaches are the only safe foundation.
- APT and pacing‑up are not pacing or EET.
- Psychological care should focus on grief and living loss, coping, comorbidity, quality of life, pacing and healthcare‑related harm, not on activation or promises of recovery.
- Many patients are traumatized by the healthcare system, including by psychology. Acknowledging and “treating” that through a professional listening ear is necessary to partially restore trust.
- Patients must be structurally and equally involved in care development, research, funding and publications.
Although I have some reservations and find the article lacking in certain areas, I believe it is an important signal that things need to change. I can only thank the authors for taking this step, because only in this way can we improve care for patients. Holding on to CBT for CFS does not contribute to that.
I hope that if follow‑up articles are written, they will in the future be written together with psychologists and psychiatrists with lived experience, so that the content truly aligns with what patients need in terms of care.
Finally, I believe that after years of iatrogenic harm, an apology from psychology and the VGCt is appropriate to truly restore trust. Simply changing the approach to psychotherapy and CBT is not enough.
I think the entire patient community is expecting this as soon as possible.
To conclude, I have adjusted their core message for clinical practice. This version seems more accurate to me:
- CBT with graded activity for CFS is fortunately increasingly under scrutiny.
- This criticism is entirely justified, because graded activity is contraindicated for people with PEM and is based on unproven hypotheses that contribute to both physical and mental iatrogenic harm. This has obstructed appropriate psychosocial support for decades.
- The way out of the controversy surrounding CBT for ME lies in explicitly distancing ourselves from CBT for CFS. As described by Grande et al., this requires a clearly defined approach based on biology, post‑exertional malaise and pacing without any form of graded activity. Psychological care must focus on grief, coping, comorbidity and quality of life and pacing instead of fatigue, activation and promises of recovery. Central to this is acknowledging harm and trauma caused by the healthcare system, including psychology. For that, an explicit apology from psychology and the VGCt is more than appropriate.
