Friday, April 24, 2015

"Fear of Exercise" in Chronic Fatigue Syndrome

Therapy Today is the flagship professional journal published by British Association for Counselling and Psychotherapy (BACP), the largest membership organisation for counselors and psychotherapists in the UK with over 40,000 members.

In the News section of its February 2015 edition, the journal published this announcement:

"Fears that exercise or physical activity will make their symptoms worse is one of the main blocks to people with chronic fatigue syndrome (CFS) benefitting from effective treatment, a new study has found. Fears that exercise or activity would make their symptoms worse accounted for up to 60 per cent of the overall effect of CBT and graded exercise therapy (GET) on outcomes. Both have been shown to be beneficial to people with CFS."

The "new study, " published in the Lancet on January 13,  is actually a rehashing of the PACE trial, an old and very flawed study. The Lancet article simply repeats the conclusions of the trial: that CBT and graded exercise are effective treatments for ME/CFS and that "fear avoidance beliefs were the strongest mediator for both CBT and GET." In short, we fear exercise, and that is why we have CFS.

As Joan Crawford has pointed out, there are numerous reports of exercise causing harm to ME/CFS patients. But what also needs to be remembered is that the methodology of the PACE trial was fundamentally flawed, that the conclusions were not validated by any accepted scientific standards, and that full results of the PACE trial have been kept secret, which has allowed its proponents to endlessly repeat its unsubstantiated "findings." 

Nowhere else in the scientific community would a single unreplicated study - one that did not even follow the most fundamental requirements of study design -  be allowed to stand unchallenged, much less hold sway over government healthcare policies.


Activity and chronic fatigue syndrome

By Joan Crawford, Therapy Today, February 2015
In the February 2015 edition of Therapy Today (News, p 6) there is a short report on exercise and CFS. Uncritically your report states, ‘Both [CBT aimed at increasing patients activity and GET (graded exercise therapy)] have been shown to be beneficial to people with CFS.’ The evidence base does not support this bold assertion.

In a recent Cochrane Review 1 of the eight clinical trials of GET (n=1518) 85 per cent of the patients (n=1287) were recruited into five of these trials based on one symptom – fatigue.2 This is a common symptom of many health problems, including major depression, making generalisation of the findings problematic. The high percentage of patients included in these trials with elevated levels of distress perhaps indicating a depressive state,1 which may be their primary condition, confounds the results.

Exercise, through behavioural activation programmes, has a moderately positive impact on patients with depression.3 It is unclear whether the modest improvement seen in some of these trials can be accounted for by an improvement in low mood caused by depression. Moreover, where there are data, there is a high usage of antidepressants in patients included in trials. Three further trials used the CDC4 CFS criteria (n=231). While these criteria purport to be more selective, they do not necessarily include patients whose primary difficulties include post-exertion weakness and debility beyond broadly defined fatigue and other general symptoms, that could be attributed to CFS or major depression.

There is also an issue with lack of evidence of patients’ fidelity to exercise programmes using objective measures. Without using monitoring devices such as actimeters or pedometers to track daily activity levels, we have no accurate way of assessing whether an increase in activity occurred and whether this helps. Black and McCully’s study5 demonstrates the difficulties CFS patients face when trying to increase activity and concluded that they were exercise intolerant, unable to sustain activity targets.

Many patient surveys from across the world report numerous instances of harm and worsening of symptoms from taking part in exercise programmes. For a summary of the difficulties and limitations of the reporting of harms, in and outside of clinical trials, and why these might be underestimated, please see Kindlon.6

Joan Crawford MA, MSc, CSci, MBPS, MBABCP
Chair, Chester ME self help (MESH);
Humanistic counsellor, CBT therapist and trainee counselling psychologist

1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Systematic Review 2015.
2. Sharpe M, Archard L, Banatvala J et al. Chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991; 84(2):118–121.
3. Cooney GM, Dwan K, Greig CA et al. Exercise for depression. The Cochrane Library 2013.
4. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994; 121(12): 953–959.
5. Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dynamic Medicine 2005; 28(4):10.
6. Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in Myalgic Encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME 2011; 19(2): 59–111.
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