Tag: CBT/GET critique

Is It Useful to Question the Recovery Behaviour of Patients with ME/CFS or Long COVID?

Abstract:

For the last few decades, medical guidelines have recommended treating patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Moreover, doctors have questioned the recovery behaviour of these patients and stimulated them to follow these treatments so that they would be able to go back to work. In this article, we reviewed trials of GET and CBT for ME/CFS that reported on work status before and after treatment to answer the question of whether doctors should continue to question the recovery behaviour of patients with ME/CFS.

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. However, this review offers no support for their use in improving the recovery of patients with an ME/CFS-like illness after infection with COVID-19, nor does it lend any support to the practice of questioning the recovery behaviour of these patients.

Source: 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. doi: 10.3390/healthcare10020392. PMID: 35207003. https://www.mdpi.com/2227-9032/10/2/392 (Full text)

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

Abstract:

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

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%).

Source: 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. 2019 Sep;24(10):1318-1333. doi: 10.1177/1359105317726152. Epub 2017 Aug 29. PMID: 28847166. https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full (Full text)

ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Abstract:

Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord.

Methods: A narrative review methodology is employed to synthesize the evidence for potential iatrogenesis.

Results: We identify seven potential modalities of iatrogenesis or harm reported by patients: difficulties in reaching an acceptable diagnosis; misdiagnosis, including of other medical and psychological conditions; difficulties in accessing the sick role, medical care and social support; high levels of patient dissatisfaction with the quality of medical care; negative responses to controversial therapies (cognitive behavioral therapy and graded exercise therapy); challenges to the patient narrative and experience; psychological harm (individual and collective distress).

Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.

Implications for rehabilitation: Patients with ME/CFS may report or experience one or more of the modalities of harms and distress identified in this review. 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.

Source: 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. 2019 Dec;41(25):3092-3102. doi: 10.1080/09638288.2018.1481149. Epub 2018 Jun 21. PMID: 29929450. https://pubmed.ncbi.nlm.nih.gov/29929450/

ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE

Letter:

Rapid Response:

Patient reports of harm from GET cannot be ignored

Dear Editor

Professor Trudie Chalder from King’s College Hospital states that:

“The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS.

Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field, I can’t help but think clinicians will be confused by this message from a respected organisation.”

Having carefully reviewed all the very extensive evidence on efficacy and safety for graded exercise therapy (GET) from relevant clinical trials, medical experts and from people with ME/CFS, the NICE guideline committee concluded that in addition to there being no sound evidence for efficacy for GET there was also consistent patient evidence of harm, sometimes serious and persisting, occurring.

Read the rest of this letter HERE. 

Source: Charles Shepherd. BMJ 2021; 375 doi: https://doi.org/10.1136/bmj.n2643 (Published 29 October 2021) BMJ 2021;375:n2643

Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS

People with ME/CFS feel let down by the medical establishment because almost all biomedical research until recently has been funded by the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation involving abnormal beliefs and behaviours and deconditioning. This research resulted in the current NICE guideline recommendations, published in 2007, for cognitive behavioural therapy (CBT) and graded exercise therapy (GET).3

Having reviewed clinical trial and patient evidence for these interventions,4 NICE now states in the introduction to the draft of its updated guideline on ME/CFS5 that “because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.” It also emphasises that CBT is not a treatment or cure for ME/CFS.

Read the full article HERE.

Source: Shepherd C B. Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS BMJ 2021; 374 :n1854 doi:10.1136/bmj.n1854 https://www.bmj.com/content/374/bmj.n1854.full

The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials

Abstract:

The National Institute for Health and Care Excellence (NICE) recently published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). NICE concluded that ME/CFS is a complex multisystem chronic medical condition for which graded exercise therapy should not be used and cognitive behavioural therapy is only a supportive therapy and not a treatment or cure. The draft guidance also highlighted the unreliability of subjective outcome measures in non-blinded trials. High quality randomised controlled ME/CFS trials are now needed to find pharmacological treatments that lead to substantial objective improvement and restore the ability to work.

Source: Vink M, Vink-Niese A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. J Health Psychol. 2021 Jan 28:1359105321990810. doi: 10.1177/1359105321990810. Epub ahead of print. PMID: 33506707. https://pubmed.ncbi.nlm.nih.gov/33506707/

The concept of ‘illness without disease’ impedes understanding of chronic fatigue syndrome: a response to Sharpe and Greco

Abstract:

In a recent article in Medical Humanities, Sharpe and Greco characterise myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as an ‘illness without disease’, citing the absence of identified diagnostic markers. They attribute patients’ rejection of psychological and behavioural interventions, such as cognitive–behavioural therapy (CBT) and graded exercise therapy (GET), to a ‘paradox’ resulting from a supposed failure to acknowledge that ‘there is no good objective evidence of bodily disease’. In response, we explain that understandings about the causes of and treatments for medical complaints have shifted across centuries, and that conditions once thought to be ‘psychosomatic’ have later been determined to have physiological causes.

We also note that Sharpe and Greco do not disclose that leading scientists and physicians believe that ME/CFS is a biomedical disease, and that numerous experts, not just patients, have rejected the research underlying the CBT/GET treatment approach. In conclusion, we remind investigators that medical classifications are always subject to revision based on subsequent research, and we therefore call for more humility before declaring categorically that patients are experiencing ‘illness without disease’.

Source: Lubet S, Tuller D. The concept of ‘illness without disease’ impedes understanding of chronic fatigue syndrome: a response to Sharpe and Greco [published online ahead of print, 2020 Jun 1]. Med Humanit. 2020;medhum-2019-011807. doi:10.1136/medhum-2019-011807 https://mh.bmj.com/content/early/2020/06/01/medhum-2019-011807

Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

For over two decades, the standard of care for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been cognitive behavior therapy (CBT) and graded exercise therapy (GET). Both interventions had been recommended by the US Centers for Disease Control and the UK NICE guidelines. Behavioral intervention as the clinical standard was given a considerable boost by the 5 million–pound PACE trial, a large multi-arm randomized trial of CBT and GET launched in 2007. This British government–funded trial was intended to definitively answer whether such interventions were beneficial in ME/CFS. In their 2011 and 2013 publications, the PACE trial authors announced with widespread publicity that 22% of their patients had “recovered” and 59–61% had clinically improved across the CBT and GET interventions., 

Read the rest of this article here.

Source: Friedberg, F., Sunnquist, M. & Nacul, L. J GEN INTERN MED (2019). https://doi.org/10.1007/s11606-019-05375-y https://link.springer.com/article/10.1007%2Fs11606-019-05375-y

Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England

Abstract:

The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm. We surveyed the National Health Service-affiliated myalgic encephalomyelitis/chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms.

We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act. Data were received from 38 clinics. 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.

Source: 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. doi: 10.1177/1359105319854532. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31234662

Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review

Abstract:

Cognitive behavioural therapy and graded exercise therapy have been promoted as effective treatments for patients with myalgic encephalomyelitis/chronic fatigue syndrome. However, criticism on the scientific rigour of these studies has been raised. This review assessed the methodological quality of studies on the effectiveness of cognitive behavioural therapy and graded exercise therapy. The methodological quality of the 18 included studies was found to be relatively low, as bias was prominently found, affecting the main outcome measures of the studies (fatigue, physical functioning and functional impairment/status). Future research should focus on including more objective outcome measures in a well-defined patient population.

Source: Ahmed SA, Mewes JC, Vrijhoef H. Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review. J Health Psychol. 2019 May 10:1359105319847261. doi: 10.1177/1359105319847261. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31072121