GET and CBT are ineffective or cause harm in ME-patients

Last updated: 2nd April 2023

by Jørn Tore Haugen, Master of Science in Engineering

Studies using objective measures show that ME-patients don’t benefit from cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET). In fact, they even show that these interventions can harm the patients. The latter is poorly understood due to poor study design and lack of follow-up by the researchers and clinicians.

The articles listed below show that GET and CBT are ineffective or can cause harm:

15. Tschopp R, König RS, Rejmer P, Paris DH Health system support among patients with ME/CFS in Switzerland, J Taibah Univ Med Sci. 2023 Jan 4;18(4):876-885. doi: 10.1016/j.jtumed.2022.12.019. eCollection 2023 Aug. PMID: 36852237

Main Findings/Conclusion: «Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees.»

14. Vink M, Vink-Niese F. Is It Useful to Question the Recovery Behaviour of Patients with ME/CFS or Long COVID? Healthcare (Basel). 2022 Feb 18;10(2):392.

Main Findings/Conclusion: «Our review shows that more patients are unable to work after treatment than before treatment with CBT and GET. It also highlights the fact that both treatments are unsafe for patients with ME/CFS. Therefore, questioning the recovery behaviour of patients with ME/CFS is pointless. This confirms the conclusion from the British National Institute for Health and Care Excellence (NICE), which has recently published its updated ME/CFS guideline and concluded that CBT and GET are not effective and do not lead to recovery. Studies on CBT and GET for long COVID have not yet been published.»

13. Wormgoor, M.E.A., Rodenburg, S.C. The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis. J Transl Med 19, 1 (2021).  

Main Findings/Conclusion: «Currently, there is no scientific evidence when it comes to effective physiotherapy for ME patients. Applying treatment that seems effective for CF [No PEM] or CFS [PEM optional] patients may have adverse consequences for ME [PEM mandatory] patients and should be avoided.»

12. Vink M, Vink-Niese F., Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review. Work. 2020 Jun 14. doi:10.3233/WOR-203174 Online ahead of print. PMID: 32568149

Main Findings/Conclusion: «GET not only fails to objectively improve function significantly or to restore the ability to work, but it is also detrimental to the health of ≥ 50% of patients, according to a multitude of patient surveys. Consequently, it should not be recommended.»

11.  Vink M, Vink-Niese F., Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies. Diagnostics (Basel). 2019 Sep 20;9(4). pii: E124. doi: 10.3390/diagnostics9040124.

Main Findings/Conclusion: «Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. …Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.»

10. McPhee G, Baldwin A, Kindlon T, Hughes BM., Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. J Health Psychol. 2019 Jun 24:1359105319854532.

Main Findings/Conclusion: «Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff. Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment. In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.»

9. Vink M, Vink-Niese A., Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

Main Findings/Conclusion: «Because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome.»

8.  Geraghty KJ, Blease C., Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disabil Rehabil. 2018 Jun 21:1-10.

Main Findings/Conclusion: «It is important health and rehabilitation professionals seek to avoid and minimize harms when treating or assisting ME/CFS patients. There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model and a biomedical model that is preferred by patients. The ‘biopsychosocial framework’ applied in clinical practice promotes treatments such as cognitive behavioral therapy and exercise therapy, however, the evidence for their success is contested and many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits, or behaviors. Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant ‘patient-centred’ approaches that give greater prominence to the patient narrative and experience of illness.»

7. Wilshire CE, Kindlon T, Courtney R, Matthees A, Tuller D, Geraghty K, Levin B. Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol. 2018 Mar 22;6(1):6. doi:10.1186/s40359-018-0218-3.

Main Findings/Conclusion: «Results; On the original protocol-specified primary outcome measure – overall improvement rates – there was a significant effect of treatment group. However, the groups receiving CBT or GET did not significantly outperform the Control group after correcting for the number of comparisons specified in the trial protocol. Also, rates of recovery were consistently low and not significantly different across treatment groups. Finally, on secondary measures, significant effects were almost entirely confined to self-report measures. These effects did not endure beyond two years. Conclusion: These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.»

6. Geraghty K, Hann M, Kurtev S., Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2017 Aug 1:1359105 17726152.

Main Findings/Conclusion: «Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).»

5. Goudsmit E, Howes S., Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment. J Health Psychol. 2017 Aug;22(9):1159-1167.

Main Findings/Conclusion: «The bias and selective discussion of the literature as evident in articles and discussions on CBT and GET reflects a lack of respect for the scientific process in general, and for colleagues with a different view in particular. This disempowers clinicians and researchers and distorts our understanding of the illness-as-lived. More rigorous peer review is essential, and the current editorial polices which operate in certain British journals must be challenged. PACE-Gate is not just an example of flawed research. It is simply the latest in a series of studies which promotes one school of thought. We find this hard to reconcile with best practice and evidence-based medicine.»

4. Ghatineh S, Vink M., FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review. Behav Sci (Basel). 2017 Aug 11;7(3). pii: E52.

Main Findings/Conclusion: «Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures. Their decision not to publish the actometer results might suggest that these did not back their recovery claims. Despite these bias creating methodological faults, the trial still found no significant difference in recovery rates («~60%») at LTFU, the trial’s primary goal. This is similar to or worse than the documented 54-94% spontaneous recovery rates within 3-4 years, suggesting that both FITNET and usual care (consisting of cognitive behaviour and graded exercise therapies) are ineffective and might even impede natural recovery in adolescents with ME/CFS».

3. 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.

Main Findings/Conclusion: «In CFS, CBT is a psychotherapy treatment offered in the absence of clear disease aetiology. While clinical trials and systematic reviews show that CBT brings about short-lived benefits for some patients, there is little evidence that CBT is a cure for CFS or restores full functional ability over the long term. Patients should be informed of the rationale behind CBT, potential benefits and possible adverse reactions, prior to entering treatment. CBT may generate negative outcomes for some CFS patients if they blame themselves for lack of improvement, or if they wrongly perceive that they are suffering from psychological illness.»

2. Loades M., The Cognitive Behavioral Treatment of Depression and Low Self-Esteem in the Context of Pediatric Chronic Fatigue Syndrome (CFS/ME): A Case Study. J Child Adolesc Psychiatr Nurs. 2015 Nov;28(4):165-74. doi: 10.1111/jcap.12125.

Main Findings/Conclusion: «Therapy was effective in remediating the young person’s mood difficulties, but appeared to exacerbate their CFS/ME symptoms.»

1. Vos-Vromans DC, Smeets RJ, Huijnen IP, Köke AJ, Hitters WM, Rijnders LJ, Pont M, Winkens B, Knottnerus JA., Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial. J Intern Med. 2016 Mar;279(3):268-82. doi: 10.1111/joim.12402. Epub 2015 Aug 26.

Main Findings/Conclusion: «In conclusion, this study provides evidence that MRT (multidisciplinary rehabilitation treatment) is more effective in reducing long-term fatigue severity than CBT in patients with CFS.»

Written by Jørn Tore Haugen, Master of Science in Engineering

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