Forced Exercise With CBT Fails for CFS – Journal of Health Psychology – August 29, 2017 – free full-text Research Article
The results of this study showed what patients have known all along:
For sufferers of CFS/ME,
exercise is the problem, not the solution,
it’s in the body, not the mind.
Cognitive behavioural therapy and graded exercise theapy 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.
Exercise-intolerance is actually a distinctive and differentiating symptom of this syndrome, so this “treatment” promotes the dangerous idea that patients can just “push” themselves beyond such symptoms.
The program uses Cognitive Behavior Therapy, which supposedly promotes rationality over emotional exaggeration (and it’s always exaggeration if your feelings are different than whatever has been certified as “normal”; if you have pain, any “excessive” negative thinking or emotional display is called “catastrophizing”).
It sounds like they use CBT to convince you to convince yourself that it’s all in your head. (this happened to me once too)
So, they used CBT to convince all these patients to exercise to exhaustion, to push themselves beyond what they knew was their limit. How rational (cognitive) is that?
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%).
Below is some background on the current (lack of) knowledge about CFS/ME and how such ineffective therapies became (and in the UK, still are) the recommended treatment for it by government health agencies.
Epidemiological estimates suggest around 1 million people in the United States (Green et al., 2015) and around 250,000 in the United Kingdom (Department of Health, 2002) suffer from myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
The abbreviation ‘ME/CFS’ is often used in the literature to denote the illness, taking account of the controversies surrounding the aetiology and pathogenesis.
Despite a relatively large number of sufferers, the disease remains poorly understood.
Doctors and scientists have yet to agree on a cause; thus, various treatments have been applied experimentally without reference to a universally accepted model of disease pathogenesis.
In 2015, the US Institute of Medicine conducted an extensive review of scientific evidence and suggested renaming ME/CFS ‘Systemic Exertion Intolerance Disease’ to better reflect the profound physical disabilities most sufferers endure, including prolonged relapses and symptom exacerbation after minimal exertion
The illness has a major negative impact on the quality of life, economic and social status
A wide range of treatments have been tested on ME/CFS patients, ranging from drug therapies, mainly antidepressants and immunological agents, to non-pharmacological therapies, often psychobehavioural therapies
Over the last two decades, two treatments, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), have gained prominence.
- CBT originated from the work of Beck (1976), an intervention for patients with depression.
- GET is an exercise therapy designed to increase the physical activity through gradual increasing of exercise tolerance levels.
The role of CBT in ME/CFS is to challenge patients’ illness beliefs and unwanted cognitions (Knoop et al., 2010; Sharpe, 2010), while GET is used to address fear activity avoidance behaviours and to prevent or reverse physiological deconditioning
The aim of CBT and GET, often used in combination, is to alter the ‘perpetuating’ or ‘maintaining’ factors within a CBT model of ME/CFS
This CBT model of ME/CFS emerged in the late 1980s with empirical testing during the 1990s by Sharpe et al. (1991) and Surawy et al. (1995) and with later refinements by Moss-Morris et al. (2003) and Wiborg et al. (2010).
CBT and GET are often compared against usual care provided by health care practitioners (e.g. family doctors) or pacing, self-pacing used by sufferers to manage their physical activity or pacing therapy (PT) guided by a therapist.
However, vigorous debate has emerged concerning the appropriateness and efficacy of these treatment approaches.
The PACE trial is a randomised controlled trial (RCT) that compared CBT, GET and PT, against standard care with
- a 59–61 per cent improvement rate and
- a 22 per cent recovery rate following CBT-GET
a 2-year follow-up study from PACE revealed that between-group differences fell away as the standard medical care and PT groups showed a similar level of improvement
Recent reanalyses of data from the PACE trial suggest that the actual improvement and recovery rates are much lower than first reported,
improvement rates fell from 60 per cent to circa 20 per cent and
recovery rates fell from
* 22 to 4 per cent for GET and
* 7 per cent for CBT, with
* 3 per cent for PT
A Cochrane Review of CBT for the treatment of ME/CFS found some benefit for a small portion of sufferers with mild-to-moderate severity, but lack of evidence of long-term benefit and inconsistent evidence that CBT has a positive impact on physical function in the disease
The US Agency for Health Care Research and Quality (AHRQ) recently downgraded their rating of CBT and GET for ME/CFS following a review that showed that the effectiveness varied according to the diagnostic criteria used in RCTs
In the United Kingdom, the National Institute for Health and Care Excellence (NICE; 2007) recommends CBT and GET as evidence-based treatments for ME/CFS. In contrast, patient surveys suggest that these treatments lead to negative outcomes for a large percentage of patients.
The ME Association (2015) in the United Kingdom, a leading UK ME/CFS charity, conducted a large patient survey to gauge sufferers’ experiences and views of the three main interventions, CBT, GET and PT.
This article presents an independent analysis of this large patient data set and compares findings against similar previously published surveys (2000–2015).
Benchmarking key findings
Findings from our primary and secondary survey analysis conflict with numerous RCTs that report CBT and GET to be superior and safe treatments for ME/CFS (e.g. PACE trial).
However, the PACE trial has attracted much criticism (Kindlon, 2011b).
Reanalysis of data from PACE reveals alterations to methods that make CBT and GET appear more beneficial than would have been the case if the original protocol had been adhered to (Goldin, 2016).
A Cochrane review of CBT in CFS found that 40 per cent of CFS patients report a reduction in self-rated fatigue following CBT, with 26 per cent improving in usual care, a differential of only 14 per cent added benefit of CBT above standard care using subjective measures.
Price et al. (2008) concluded that the benefits of CBT are not sustained over the long term and that there is little evidence of improvements in physical function following CBT.
That’s because they were using CBT to brainwash patients to believe they should push their limits. This would have triggered the placebo effect – for a while.
The predictable result of miserable exhaustion quickly proved these new programmed beliefs wrong.
Moss-Morris et al. (2005) observed a decrease in self-rated fatigue in CFS using GET, but Wiborg et al. (2010) observed that reduced fatigue did not correlate with an increase in physical activity measured objectively with actometers.
A Cochrane review of non-pharmacological interventions for functional syndromes, including CFS, noted multiple methodological concerns in psychotherapy trials, including high drop-out rates and selective biases in sampling (Van Dessel et al., 2014).
ME/CFS is difficult to diagnose and it is speculated that clinical trials often involve volunteer bias and include patients with psychiatric illnesses and milder cases.
These patients may respond better to CBT or GET than patients with more moderate-to-severe cases that are captured by surveys.
A Cochrane review of exercise therapy for CFS found that exercise therapy did not have a detrimental impact on primary outcomes (Larun et al., 2016), but this finding is based on limited reporting of serious adverse reactions (SARs), from just one study.
The largest RCT (PACE) found little evidence of serious adverse effects, with just two SARs reported in the GET group (Dougall et al., 2014).
The FINE trial (Wearden et al., 2010) also found no SARs using CBT/GET.
In contrast, a detailed report on harms in ME/CFS treatment (Kindlon, 2011a) found that
- 51 per cent of patients surveyed (range, 28%–82%; n = 4338) reported that GET worsened their health, while
- 20 per cent (range, 7%–38%; n = 1808) reported some adverse reaction to CBT.
Our survey findings of high negative responses to GET are inconsistent with RCTs that report no substantial adverse outcomes using CBT/GET to treat ME/CFS, but are consistent with Kindlon (2011a) and mirror the findings from a detailed epidemiological study by Nacul et al. (2011) who found that
- 81 per cent of ME/CFS patients reported fatigue after exercise (>24 hours),
- 72 per cent had an intolerance to exercise and
- 69 per cent had malaise after exertion (>24 hours).
A recent meta-synthesis of seven relevant clinical studies found that acute exercise increases fatigue in ME/CFS patients, particularly after 4 hours (Loy et al., 2016).
Physiological reasons for exercise intolerance and post-exertional malaise in ME/CFS include cellular events and immune activation events (Twisk and Geraghty, 2015).
CBT is offered to patients based on a model of dysfunctional illness beliefs (Deary et al., 2007; Sharpe, 2010) and rests on a theory that ME/CFS is perpetuated by such factors (Moss-Morris et al., 2003).
In our primary survey, patients were split on the appropriateness of CBT, with over half finding it inappropriate (46% appropriate/partly appropriate) to their needs.
Findings from our patient survey and secondary survey analysis show that CBT has little impact on symptom improvement for approximately 70–90 per cent of patients, raising questions about the utility of the CBT model of ME/CFS.
I’m sure this model will survive for decades, if not in policy, then in healthy people’s minds. This is what people want to believe and it will be hard to convince them to change.
No one will do research to prove a therapy ineffective (unless it’s about the evils of opioids) because it’s a dead end. It’s much easier to get funding to research whatever new treatment is currently in vogue, like acupuncture or massage.
For those who benefit from CBT, CBT may be an adjunct therapy that helps ME/CFS patients deal with
- the emotional distress of illness,
- the anxiety generated by suffering troubling physical symptoms, and
- the secondary depression that is associated with most chronic illnesses (Harris, 2012).
This sure sounds like catastrophizing to me. But with CFS/ME patients, these feelings are not considered pathological (as when they are displayed by patients with pain).
These patients suffer from an invisible illness just as disabling as chronic pain. They, too, are often assumed to be “making it up”, even by doctors and researchers who publish biased studies.
GET fails to help the majority of ME/CFS patients improve symptoms and has a marked negative impact on approximately 50 per cent of patients.
GET also had a marked negative impact on perceived degree of illness severity, particularly for those with severe to very severe presentations, with 21 per cent more patients reporting being more severely afflicted after GET.
Pacing alone brought about the greatest positive impact on symptom experience with 44 per cent of patients reporting improvement, compared with 8 per cent in CBT and 12 per cent in GET treatment.
Following PT, 14 per cent reported worsening symptoms, compared with 18 per cent in CBT and 74 per cent in GET, making pacing the least negative treatment approach.
Unlike CBT and GET, that are interventions to emerge from a theoretical model of ME/CFS (Deary et al., 2007; Surawy et al., 1995), pacing is less of a formal therapy and more of a personal approach to energy management practised by ME/CFS sufferers.
Once again, only patients themselves can know what works best for them.
This article presents results pertaining to ME/CFS patient reports of symptom changes following CBT, GET or PT.
While a small percentage of patients report some benefit from either CBT or GET, the majority experience no benefit.
In contrast, pacing brings about the greatest positive impact with the least negative reactions.
GET brings about a substantive deterioration in symptoms for almost half of patients and it is the least favoured treatment, compared with pacing, which is most favoured by patients.
Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes.
These findings conflict with evidence from clinical trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span 15 years and multiple countries.
Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness.
Further research is needed to validate these findings and to investigate if pacing is a viable alternative treatment approach in ME/CFS.