Discussing acceptance and commitment therapy in ME/CFS.

Jonsjo et al. recently published a feasibility study on acceptance and commitment therapy (ACT) in ME/CFS. The study described itself as the “first trial of ACT for patients diagnosed with ME/CFS.” https://doi.org/10.1016/j.jcbs.2019.02.008

(The study has a thread here: Sweden: Acceptance & Commitment Therapy for ME/CFS – A feasibility study, 2019, Jonsjö et al)

I submitted a commentary, criticizing the intervention in the trial. My letter was rejected but the editors did provide a brief review, explaining why they didn’t accept it. I disagreed with their comments and wrote a short rebuttal. Luckily, the editors were kind enough to give me permission to make their review public.

So I will post my letter, their review and my rebuttal in the comments below. I hope this will offer insight into the controversy and different viewpoints on CBT in CFS and that it will further the discussion on ACT in CFS.

 

1) The letter:

Acceptance in ME/CFS: commentary on Jonsjö et al., 2019.

With Jonsjö et al.’s study on acceptance and commitment therapy (ACT), a new form of psychotherapy has been trialed in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). [1]

For many years, the standard psychological intervention in ME/CFS consisted of cognitive behavioral therapy (CBT) based on the fear-avoidance model. Originally developed for the treatment of chronic pain, this model has proven to be highly controversial in the field of ME/CFS. The focus on challenging somatic attributions, for example, has not been supported by scientific evidence and is disliked by patients who, generally, experience their illness as an organic disease. [2] The instruction to gradually increase activity levels may even be counterproductive, as ME/CFS patients report a deterioration of functioning when they exceed their energy levels. In multiple surveys, ME/CFS patients claim that this type of CBT worsened their health. [3] The blind transferal of a theoretical model from the chronic pain literature to the field of ME/CFS seems to have led to inappropriate treatment advice.

Unfortunately, the trial by Jonsjö et al. [1] does not offer a viable alternative, but more of the same. Their treatment manual for ACT in patients with ME/CFS consists of a protocol designed for patients with chronic pain. In some of the questionnaires, the word “pain” is simply replaced with the word “fatigue”. This could, once again, lead to inappropriate treatment advice. In Jonsjö et al. ‘s feasibility trial, for example, ME/CFS patients were encouraged to “decrease behaviors aimed at avoiding or reducing discomfort”. The authors do not provide any evidence for an “unwillingness to experience discomfort” in patients with ME/CFS. Research has indicated rather the contrary: some ME/CFS patients ignore their symptoms and try to push through, even though this leads to more disability. [4] Consequently, ME/CFS patients are advised to pace their energy expenditure to prevent overexertion and relapses. [5] This is the behavioral intervention with the greatest positive impact and the least negative reactions in surveys of ME/CFS patients. [3] The instructions by Jonsjö et al. [1] run counter to this advice and risk pushing patients towards overexertion.

Instead of acceptance of the feeling of discomfort, ACT in ME/CFS might be more effective if focused on acceptance of the illness and the stigma that comes with it. In an in-depth investigation of ME/CFS patients who completed CBT, the major theme that emerged was recognition and validation. [6] Accepting the diagnosis of ME/CFS and the limitations that come with it, might prevent patients from pursuing alternative (non-scientific) explanations and unrealistic future projects. Learning to accept the confines of this illness might reorient attention towards activities that are still possible and meaningful to the patient. Acceptance of ME/CFS might help patients make the most out of their disability.


References

[1] Jonsjö, M.A., Wicksell, R.K., Holmström, A., Andreasson, A., Olsson, G.L. (2019). Acceptance & Commitment Therapy for ME/CFS (Chronic Fatigue Syndrome) – A feasibility study. Journal of Contextual Behavioral Science, In press. doi.org/10.1016/j.jcbs.2019.02.008.

[2] Friedberg, F. (2016). Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue: Biomedicine, Health & Behavior, 4(3), 127-133. doi.org/10.1080/21641846.2016.1200884

[3] Kindlon, T. (2011). Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME, 19(2), 59-111.

[4] O'connor, K., Sunnquist, M., Nicholson, L., Jason, L.A., Newton, J.L., Strand, E.B. (2017). Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves. Chronic Illness, 15(1), 51-60. doi: 10.1177/1742395317746470.

[5] Goudsmit, E.M., Nijs, J., Jason, L.A., Wallman, K.E. (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disability and Rehabilitation, 34(13), 1140-7. doi: 10.3109/09638288.2011.635746.

[6] Picariello, F., Ali, S., Foubister, C., Chalder, T. (2017). 'It feels sometimes like my house has burnt down, but I can see the sky': A qualitative study exploring patients' views of cognitive behavioural therapy for chronic fatigue syndrome. British Journal of Health Psychology, 22(3), 383-413. doi: 10.1111/bjhp.12235.

 

2) Comments from the editors and reviewers:

Dear author,

We very much appreciate you taking the time to submit a commentary in response to a recently published article in the Journal of Contextual Behavioral Science. We greatly value constructive discussion on important issues relating to the conduct of science, and it is clear that this commentary was written with that spirit in mind, to properly examine and discuss relevant scientific decisions and interpretations as they pertain to the existing literature. Unfortunately, we cannot publish this commentary, due to reasons we list below.

It is not our understanding/interpretation of the literature that CBT for chronic fatigue is based historically on the fear avoidance model. Although there are certainly parallel concepts, we believe this is a mischaracterization. Similarly, we believe it is a mischaracterization to claim that CBT for CFS is primarily graded activation or that modern CBT protocols focus largely on challenging somatic attributions. Related, graded activation is far from universally effective, however the literature suggests that it is helpful for many, if not most, individuals in major the studies reported in the literature. The claim that it is generally detrimental then also seems unfounded. Also, the authors properly acknowledge this limitation in their review and rationale for the current study so that the reader is aware of the limitations of graded activation.

More generally, CBT is the established evidence-based treatment approach for CFS, and we disagree with your characterization of the use of CBT as proliferating “inappropriate treatment advice,” which we feel is an unfounded statement given the context of the entire CBT for CFS literature.

Your description of acceptance is extremely narrow, and as is such is a mischaracterization of acceptance-based treatment (“accepting the feeling of discomfort”), which typically involved targeting several interrelated processes, only one of which is acceptance. The authors present a model based on psychological flexibility, of which acceptance is a single component. In the psychological flexibility model, as explained by the authors, acceptance is a vehicle specifically for values-based behavior change, not a skill to be applied to tolerance of physical pain for no purpose. The authors point out that acceptance is used as an approach to “…discomfort that cannot be readily reduced or removed…” As is such, it is not inconsistent with an approach that aims to lower or reduce discomfort when that is possible, nor would it be presented as an alternative to reducing or managing discomfort that can be reduced or managed through other methods, and the authors certainly do not recommend that.

You criticize the use of the phrase “…were encouraged to decrease behaviors aimed at reducing or avoiding discomfort” without acknowledging the full context of the treatment intervention. Of great importance, there is a whole intervention module aimed at using the patient’s own experience to allow the patient to identify where pain management strategies have worked for them and where they have not. Thus, “decreasing behaviors aimed to lower or reduce discomfort” specifically refers to such behaviors that the patient has identified as being ineffective and/or as preventing them from achieving desired life goals/ends. Thus, your criticism is misguided and also seems intentionally crafted as a straw-man argument.

We do acknowledge that CBT and graded activation can be seen as controversial and that it some instances can lead to increased symptoms (the authors acknowledge this too, see above), and certainly can, like all treatments, be done poorly. CFS are clearly highly complex and there is room for a lot of nuanced discussion of the issues facing CFS patients and how CBT or acceptance-based interventions could benefit from changes elucidated by negative patient experiences. However, in our opinion the commentary presented would not achieve the goal of generating such nuanced discussion for the reasons listed above.

Two of our most trusted pain experts were consulted before making this decision.

 

3) The rebuttal:

It is not our understanding/interpretation of the literature that CBT for chronic fatigue is based historically on the fear avoidance model. Although there are certainly parallel concepts, we believe this is a mischaracterization.

CBT for CFS was introduced by the research team of Simon Wessely at Kings College. They explicitly stated that “the rationale for cognitive behavioural therapy is based on a fear avoidance model”. [1] In the first trial of CBT in CFS, the authors made reference to the treatment of avoidance behavior in chronic pain. They described the model behind their approach as follows:

“Avoidant behaviour (which is reinforced by the advice currently offered to patients) sustains symptoms, by decreasing activity tolerance and increasing sensitivity to any stimulation, as does associated mood disorder. Re-exposure to activity causes more symptoms, and more fear. The result is a vicious circle of symptoms, avoidance, fatigue, demoralisation and depression-the clinical picture of CFS. A similar role for avoidance in perpetuating symptoms has been implicated in chronic pain.”[2]​

According to Stahl et al. [3], who’ve studied CBT in adolescent CFS patients, “CBT for CFS is based on a fear avoidance beliefs model about physical activity.” In the largest RCT, the PACE-trial, “CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome.” [4]

Similarly, we believe it is a mischaracterization to claim that CBT for CFS is primarily graded activation or that modern CBT protocols focus largely on challenging somatic attributions.

It should be noted that I made neither of these claims in my letter and merely mentioned that both aspects of CBT for CFS have proven to be controversial in the past. It is untenable to claim that graded activation is not a central element of CBT in CFS. As explained by Wessely and colleagues:

“At, the heart of CBT is a behavioral approach to the impairment of activity that is part of the definition of CFS. Other benefits, such as those on morale, fatigue, mood, sleep, and symptoms follow, but the primary aim of treatment is to restore activity.” [5]​

Similarly, challenging somatic attributions was a central aspect of the CBT for example in the model proposed by the research group at Nijmegen University. According to Vercoulen et al.:

“Attributing complaints to an organic cause may reinforce the idea that physical activity is harmful and result in avoidance of physical activity. Attributing complaints to a somatic cause may also lead to low sense of control over symptoms, which in turn may produce mood disorder.” [6]​

Consequently, the CBT-model aimed to increase physical activity and to decrease somatic attributions.

Related, graded activation is far from universally effective, however the literature suggests that it is helpful for many, if not most, individuals in major the studies reported in the literature. The claim that it is generally detrimental then also seems unfounded.

My letter doesn’t claim that graded activation is generally detrimental. It refers to the symptom of post-exertional malaise and patient surveys reporting harms of CBT. Both arguments suggest that graded activation can be counterproductive in patients with CFS.

More generally, CBT is the established evidence-based treatment approach for CFS, and we disagree with your characterization of the use of CBT as proliferating “inappropriate treatment advice,” which we feel is an unfounded statement given the context of the entire CBT for CFS literature.

Challenging somatic attributions in CFS - which the CDC currently describes as “a biological illness, not a psychologic disorder” - is considered inappropriate and has now been removed from most CBT-models for CFS. Similarly, due to post-exertional malaise, some CFS patients might tolerate graded activity programs poorly. These issues are discussed by Friedman [7], Geraghty & Blease [8] and into more detail in the recent paper: “The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model.” [9]

According to a recent editorial by Kenneth J. Friedman “mischaracterization of ME/CFS has led to inappropriate and, for some, harmful treatment options. Characterization of ME/CFS as a psychosomatic illness has led to the belief that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are therapeutic if not curative. The publications demonstrating the therapeutic and potentially curative values of CBT and GET have now been challenged. Attempts to correct the literature are currently underway.”[10]

Your description of acceptance is extremely narrow, and as is such is a mischaracterization of acceptance-based treatment (“accepting the feeling of discomfort”), which typically involved targeting several interrelated processes, only one of which is acceptance. The authors present a model based on psychological flexibility, of which acceptance is a single component. In the psychological flexibility model, as explained by the authors, acceptance is a vehicle specifically for values-based behavior change, not a skill to be applied to tolerance of physical pain for no purpose.

My commentary focused only on the aspects of ACT that may not be appropriate in the CFS patient population. In the trial by Jonsjo et al., “an unwillingness to experience discomfort” was considered to “decrease tolerance to bodily symptoms” and patients “were encouraged to decrease behaviors aimed at avoiding or reducing discomfort.” Due to post-exertional malaise this may not be adequate treatment advice for CFS patients.

As an alternative to challenging experiential avoidance, I proposed that “learning to accept the confines of this illness might reorient attention towards activities that are still possible and meaningful to the patient”, in other words, a value-based behavior change.

The authors point out that acceptance is used as an approach to “…discomfort that cannot be readily reduced or removed…” As is such, it is not inconsistent with an approach that aims to lower or reduce discomfort when that is possible, nor would it be presented as an alternative to reducing or managing discomfort that can be reduced or managed through other methods, and the authors certainly do not recommend that.

This is incorrect. The authors do present ACT as an alternative to reducing or managing discomfort that can be reduced or managed through other methods. These alternative strategies are explicitly described as maladaptive. According to Jonsjo et al., in ACT “strategies to avoid or reduce experiences of symptoms and distress (i.e. experiential avoidance) restrict activities and thereby reduce the possibility to live a broad and satisfactory life.” As discussed in my commentary, no evidence is provided for this statement in CFS patients.

You criticize the use of the phrase “…were encouraged to decrease behaviors aimed at reducing or avoiding discomfort” without acknowledging the full context of the treatment intervention. Of great importance, there is a whole intervention module aimed at using the patient’s own experience to allow the patient to identify where pain management strategies have worked for them and where they have not. Thus, “decreasing behaviors aimed to lower or reduce discomfort” specifically refers to such behaviors that the patient has identified as being ineffective and/or as preventing them from achieving desired life goals/ends. Thus, your criticism is misguided and also seems intentionally crafted as a straw-man argument.

In ACT experiential avoidance, is considered to “reduce the possibility to live a broad and satisfactory life.” In contrast, CFS patients might have experienced this strategy to be helpful. Strategies to avoid or reduce symptoms are used in an activity management strategy called “pacing”, as described in a consensus document by Goudsmit et al. [11]. In patient surveys pacing is considered the most acceptable and preferred form of activity management for people with CFS. Consequently, there is a direct conflict between the assumptions of ACT in the trial by Jonsjo et al. and the experiences of many CFS patients. My commentary was intended to bring this conflict to the authors' attention.

References

[1] Deale A, Chalder T, Wessely S. Commentary on: randomised, double-blind, placebo-controlled trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiatry. 1998 Jun;172:491-2. https://www.ncbi.nlm.nih.gov/pubmed/9828988

[2] Butler S, Chalder T, Ron M, Wessely S. Cognitive behaviour therapy in chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 1991 Feb;54(2):153-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014351/pdf/jnnpsyc00500-0053.pdf

[3] Stahl D, Rimes KA, Chalder T. Mechanisms of change underlying the efficacy of cognitive behaviour therapy for chronic fatigue syndrome in a specialist clinic: a mediation analysis. Psychol Med. 2014 Apr;44(6):1331-44. https://www.ncbi.nlm.nih.gov/pubmed/23931831

[4] White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011 Mar 5;377(9768):823-36. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/

[5] Chalder T, Deale A, Wessely S, Marks I. Cognitive behavior therapy for chronic fatigue syndrome. Am J Med. 1995 Apr;98(4):419-20; author reply 421-2. https://www.amjmed.com/article/S0002-9343(99)80332-5/pdf

[6] Vercoulen JH, Swanink CM, Galama JM, Fennis JF, Jongen PJ, Hommes OR, et al. The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: development of a model. J Psychosom Res. 1998 Dec;45(6):507-17. https://www.ncbi.nlm.nih.gov/pubmed/9859853

[7] Friedberg F. Cognitive-behavior therapy: why is it so vilified in the chronic fatigue syndrome community? Fatigue. 2016;4(3):127–131. https://www.tandfonline.com/doi/pdf/10.1080/21641846.2016.1200884?needAccess=true

[8] Geraghty KJ, Blease C. Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent. J Health Psychol. 2018 Jan;23(1):127-138. https://www.ncbi.nlm.nih.gov/pubmed/27634687

[9] Geraghty KJ, Jason LA, Sunnquist M, Tuller T, Blease C, Adenji C. J Health Psychol. 2019: 1–14. https://journals.sagepub.com/doi/pdf/10.1177/2055102919838907

[10] Friedman KJ. Advances in ME/CFS: Past, Present, and Future. Front. Pediatr. 7:131. https://www.frontiersin.org/articles/10.3389/fped.2019.00131/full

[11] Goudsmit EM, Nijs J, Jason LA, Wallman KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document. Disabil Rehabil. 2012;34(13):1140-7.https://www.ncbi.nlm.nih.gov/pubmed/22181560

 

Did they have any response to your rebuttal? Thanks for all your work on this.

This seems unduly patronising after they were reduced to straw-manning you!

 

Thank you very much @Michiel Tack!

Excellent!

So, this journal doesn't want to print critiques of those they publish.....hmm.

 

It is interesting to see the dependence on the analogy with treatment for pain. The early justification for use of CBT in CFS was analogy with the reported success of the treatment in fibromyalgia, I have often thought that that was the reason for Wessely and Sharpe having to emphasise similarities between CFS and fibromyalgia. Without that link there was little or no evidence to justify their interventions in CFS.

 

As always. Well done sir!!

 

@chrisb

Interesting, your history comments re FM and ME comparisons and psych theories.

I understand many may be diagnosed with both ME and FM. I think @Alvin talked about this on another thread. I believe exercise can be good for FM, but what a dilemma to also have ME, where one can easily exceed with exercise.

 

I thought I had better find my authority for this claim. It was in part:

We therefore propose that cognitive factors (in this case beliefs about health and illness) play an important part in perpetuating chronic disability. These so-called dysfunctional beliefs act as mediators of dysfunction, as has again been observed in chronic pain-the belief that pain invariably implies disability is a better prediction of the severity of impairment than subjective measurements of the severity of pain (Riley et al 1988) These dysfunctional attitudes concerning the interaction between rest, exercise and health also affect treatment outcome (Riley et al 1988).

Cognitive Behavioural Management of PVFS , S Wessely S Butler T Chalder and A David in Post viral Fatigue Syndrome eds Jenkins and Mowbray @p311

…...where Angels fear to tread.

 

The problem with the first sentence is 'perpetuating', with that word removed I don't personally have a problem with it.

I see it as a statement of the bleedin obvious.

The problem is the word perpetuating, and all the conclusions they come to based on it.

I've got limited resources right now so first sentence is as far as I can analyse, but I suspect that without that 'first' flawed statement the rest doesn't follow.

 

@chrisb

Thank you for the source!

Once again, BPS theory has an opinion that a belief about having an illness, pain etc., is dysfunctional. Prove it! The absence of evidence is not evidence of absence. These theories are the "Because I said so" theories.

 

Either they are liars or have no idea what they're doing. Likely a little of both. They put on full display that they do not understand the disease and rely on an alternative belief system devoid of reliable evidence.

This is just a complete waste of limited resources, yet again. It serves no purpose whatsoever and is based on assumptions of us being drooling idiots who need to be told basic things all over again.

The garbage goes in the garbage can, yes, thank you very much for this major insight that I would have never reached on my own because I am a helpless little baby.

 

Re my choice of the word "opinion" in earlier post, actually, the BPS group have beliefs about others' beliefs.

 

CBT was originally developed by David Burns to treat self-defeating thoughts in depression. Interesting and probably useful. Then in 2005 or so, CBT was being used in chronic back pain. Since then, it's become a first-line therapy in many difficult conditions.

Trouble is that this generalizing is faulty. For instance, in fibro, often the underlying beliefs in CBT are to push through any "discomfort" and just live a normal life. Yes, lip service is given to limits and individualized treatment, but the underlying belief is that the patient has faulty beliefs.

I beg to differ. In a recent bout of Fibro/the venn of CFS (or some aspects of it), I forgot, I was in denial about my limits (60 minutes outside the home per day max). I had a week from hell with major distress and new symptoms. A wasted week. But I learned something (knocks head against wall for 200th time).

Pain and fatigue are the teachers. They are not some aberrant belief system that one has to learn to ignore. Ignore at your peril.

Again, I find this subject very distressing. I'm glad we're fighting it.

The only help I have ever received is from other patients. And one Kaiser shrink I had to see to get a clonazepam prescription. I complained to him that I couldn't stop obsessing about not being able to work. He said: if your body won't let you work, you can't work.

That was helpful coming from an authority figure. But the CBT crowd are not.

 

Bizarre...

Am I the only one getting the sense the editors were wilfully misunderstanding @Michiel Tack?

Anyway, thanks for all your excellent work, again, @Michiel Tack.

 

I came across this https://www.apa.org/pubs/journals/releases/amp-a0035623.pdf

It's about CBT and Acceptance and Commitment Therapy (ACT) in treating chronic pain, and the history of research both negative and positive. And the result is not convincing, to say the least. This is for chronic pain, no mention of ME/CFS.

Page four is interesting, with concept of psychological flexibility (whatever that is). Doesn't correspond to common sense.

Nor does this ACT theory.

 

Couple of points of reference about the concept of psychological flexibility.
However, I fear it's widespread use and waste of research dollars.

also https://www.sciencedirect.com/science/article/pii/S0272735810000413?via=ihub

And here is another tack https://workingwithact.com/what-is-act/what-is-psychological-flexibility/

 

I don't know if it is just me, but Acceptance and Commitment Therapy sounds disturbingly like "Accept the Lord into your heart, give your life to Him, and your pain will be taken away." In other words it sounds like religious brainwashing.