Disagreements still exist over the chronic fatigue syndrome

Editor—Although the ME Association welcomes the royal colleges’ unequivocal conclusion that the chronic fatigue syndrome is a genuine and disabling condition,1 we also agree that their report will “engender disagreement on both sides of the Atlantic.”2 We have no problem in accepting that the alternative name for the condition—myalgic encephalomyelitis (ME)—is pathologically incorrect, and this is a matter that we now intend to address. However, labels are important to patients as well as doctors, and support groups throughout the world are unanimous in their view that “chronic fatigue syndrome” is a totally inadequate way of describing the symptomatology and associated disability. The chronic fatigue syndrome may well become a dustbin diagnosis for anyone with chronic fatigue, and a new name that is acceptable to both doctors and patients clearly needs to be found.

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Source: Shepherd C. Disagreements still exist over the chronic fatigue syndrome. BMJ. 1997 Jan 11;314(7074):146. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

Chronic fatigue syndrome

“Biopsychosocial approach” may be difficult in practice

This week a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in Britain issued a report on chronic fatigue syndrome.’ The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic.

The term chronic fatigue syndrome is relatively new. It first appeared in the 1988 proposal by the United States Centers for Disease Control to formalise a working case definition for symptoms that had been variously named and attributed to numerous causes for over two centuries. Through field testing, the case definition was revised and simplified in 1994. In essence, it classifies a constellation of prolonged and debilitat ing symptoms as worthy of medical attention and study (see box). Related case criteria were developed by consensus at Oxford in 199 .4 Neither the American nor the Oxford criteria assume the syndrome to be a single nosological entity. As the royal colleges’ report concludes, the term chronic fatigue syndrome is appropriate because it carries none of the inaccurate aetiological implications of the alternative acronyms-myalgic encephalomyelitis, chronic fatigue syndrome, and immune dysfunction syndrome.

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Source: Straus SE. Chronic fatigue syndrome. BMJ. 1996 Oct 5;313(7061):831-2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359057/

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Patients’ beliefs about their illness were probably not a major factor

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Michael Sharpe and colleagues’ study confirms that the best medical advice for patients with the chronic fatigue syndrome is not “nothing can be done” or that “the disease will burn itself out.”‘ The study produced improvement in 73% of the patients, which is comparable to the 80% improvement produced by my management techniques.2 3 Interestingly, my approach seems to be fundamentally different from that of Sharpe and colleagues.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf

 

Source: Ho-Yen DO. Cognitive behaviour therapy for the chronic fatigue syndrome. Patients’ beliefs about their illness were probably not a major factor. BMJ. 1996 Apr 27;312(7038):1097-8. http://www.ncbi.nlm.nih.gov/pubmed/8616430

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Essential elements of the treatment must be identified

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-We have several practical and theoretical concerns about Michael Sharpe and colleagues’ study of cognitive behaviour therapy in the chronic fatigue syndrome.’ The authors managed to obtain almost 100% uptake of treatment and compliance among patients who were attending an infectious diseases clinic and were strongly convinced that their chronic fatigue had a physical cause. We would struggle to engage our patients similarly, even with two hours for an initial appointment, and we could not offer them anything approaching an hour of treatment a week for four months. The difference between what was provided in the study and what clinicians can routinely offer their patients makes it important to identify the essential elements of the treatment.

The package given included cognitive techniques such as “question[ing] a simple disease explanation,” “strategies to reduce excessive perfectionism and self criticism,” and a problem solving approach of “gradual and consistent increases in activity.” The continuing improvement after the end oftreatment is unusual for the cognitive psychotherapies and suggests that the behavioural component was most effective. We find it puzzling, therefore, that the authors attribute the beneficial effects of treatment to “a specific effect on illness perpetuating beliefs and coping behaviour,” particularly as these attitudes did not change substantially. The patients would inevitably report less avoidance of exercise if they were complying with the study. After treatment at least half of the patients still believed that the illness was physical (from tables 2 and 5), and the vast majority still applied the damaging label of “myalgic encephalomyelitis”2 to their condition.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350875/pdf/bmj00539-0053b.pdf

 

Source: Lawrie SM. Cognitive behaviour therapy for the chronic fatigue syndrome. Cognitive behavior therapy. Essential elements of the treatment must be identified. BMJ. 1996 Apr 27;312(7038):1097; author reply 1098. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350875/

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Cognitive behavior therapy should be compared with placebo treatments

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Lest Michael Sharpe and colleagues’ paper lends respectability to the notion that the chronic fatigue syndrome is a diagnostic entity or suggests that cognitive behaviour therapy has any value specific to the condition,1 I wish to make three points.

Firstly, the disorder that the authors treated is heterogeneous, the only defining criteria used being fatigue, impaired daily activities, and the absence of signs of physical disease or “severe depression.” Claims for a specific effect in any diffuse symptom complex are dangerous. Quinine is effective in many cases of cramp, but neither the symptom nor the benefit is specific.

Secondly, cognitive behaviour therapy and any comparable substitute were denied the control patients, who were therefore matched only on pretreatment criteria regarding their clinical state and not controlled in respect of a comparable treatment. Despite the authors’ claim for a “specificity of treatment effect” the benefits shown are consistent with the provision of much attention, encouragement, and a positive attitude to the nature of the illness and the strategies to counter it.’

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350872/pdf/bmj00539-0053c.pdf

 

Source: Pearce J. Cognitive behaviour therapy for the chronic fatigue syndrome. Cognitive behavior therapy should be compared with placebo treatments. BMJ. 1996 Apr 27; 312(7038): 1097–1098. http://www.ncbi.nlm.nih.gov/pubmed/8616428

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Use an interdisciplinary approach

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-From their randomised trial in the chronic fatigue syndrome Michael Sharpe and colleagues conclude that cognitive behaviour therapy is more effective than “medical care” in improving day to day function.1 It is not clear that the data presented justify this conclusion. Firstly, the authors do not compare like with like: the group given cognitive behaviour therapy received 16 hours of therapy while the “medical” group received no intervention. Secondly, the “medical” group of patients were “advised to increase their level of activity by as much as they felt able,” which may have had adverse effects if the activity was unsupervised and inappropriate.2 This could have affected the results by making the group given cognitive behaviour therapy seem to improve by more than they did. Thirdly, all patients, and particularly those with the chronic fatigue syndrome, need detailed discussion of their problems. Many doctors will not have been aware that in providing such discussion-surely the duty of all doctors-they were in part providing cognitive behaviour therapy.

You can read the full comment herehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350862/pdf/bmj00539-0053a.pdf

 

Source: Eaton KK. Cognitive behaviour therapy for the chronic fatigue syndrome. Use an interdisciplinary approach. BMJ. 1996 Apr 27;312(7038):1096; author reply 1098. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350862/

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Patients were not representative of all patients with the syndrome.

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Michael Sharpe and colleagues conclude that cognitive behaviour therapy leads to a sustained reduction in functional impairment for patients with the chronic fatigue syndrome.1 The levels of disability of the 60 patients who took part in the study suggest, however, that these patients do not represent a comprehensive cross section of patients with the syndrome. The 60 patients scored 60-78 on the Karnofsky scale assessing disability and so represent a different population from the 143 patients reported on by Case History Research on ME (myalgic encephalomyelitis), who would have scored 30-60 (R Gibbons et al, first world congress on chronic fatigue syndrome and related disorders, Brussels, Nov 1995). Fifty nine of these 143 patients reported functional deterioration after sustained, incrementally increased physical exertion.

The authors did not assess other symptoms common in the chronic fatigue syndrome, such as pain, nausea, muscle weakness, or balance problems-a measure of the reduction of which was taken as a standard for “success” in an earlier trial.2 The lack of evidence of significant changes in other measures besides “the principal complaint of severe fatigue” in the authors’ study tends to diminish the validity of their conclusions.

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Source: Gibbons R, Macintyre A, Richards C. Cognitive behaviour therapy for the chronic fatigue syndrome. Patients were not representative of all patients with the syndrome. BMJ. 1996 Apr 27;312(7038):1096; author reply 1098. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350876/

Cognitive behaviour therapy for the chronic fatigue syndrome. Good general care may offer as much benefit as cognitive behaviour therapy

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Successful outcomes have been reported from controlled clinical trials of an eclectic range of treatments-from immunotherapy to magnesium supplementation-for the chronic fatigue syndrome.’ Unpublished data suggest that equal success can be achieved with some forms of alternative therapy (for example, homoeopathy) when patients believe strongly in the approach. Most physicians, however, continue to view all such results with healthy scepticism. An equally cautious view needs to be taken when assessing Michael Sharpe and colleagues’ study of cognitive behaviour therapy.2 In a disorder that is almost certainly heterogeneous in nature, two important questions need to be answered before we can conclude that cognitive behaviour therapy is of value.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350899/pdf/bmj00539-0052b.pdf

 

Source: Shepherd C. Cognitive behaviour therapy for the chronic fatigue syndrome. Good general care may offer as much benefit as cognitive behaviour therapy. BMJ. 1996 Apr 27;312(7038):1096; author reply 1098. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350899/

 

Illness behaviour in the chronic fatigue syndrome and multiple sclerosis. Disentangling common characteristics is not so easy

Comment on: “Abnormal” illness behaviour in chronic fatigue syndrome and multiple sclerosis. [BMJ. 1995]

 

EDITOR,-Over the past few years I have seen a growing number of patients with the chronic fatigue syndrome who have been told by psychiatrists and psychologists that abnormal illness behaviour and psychosocial factors are the main factors perpetuating their disability. Few patients have accepted or believed this explanation; neither have I. The ME Association now has evidence that the fashionable theory of abnormal illness behaviour linked to somatisation is being used by several agencies as a convenient excuse for turning down applications for financial benefits or for putting pressure on vulnerable patients to undergo speculative “rehabilitation” programmes, which they may be reluctant to participate in.

Although Peter Trigwell and colleagues conclude that patients with the chronic fatigue syndrome and multiple sclerosis have virtually identical patterns of illness behaviour without any form of shared aetiology, their study suggests that the two conditions may have more in common than just central fatigue and uncertainty about long term prognosis.’ When DeLuca et al examined patients with the chronic fatigue syndrome, patients with multiple sclerosis, and healthy controls using a paced auditory serial addition test (a method of assessing processing of complex auditory information) they found that both groups of patients scored significantly below the controls, indicating similar difficulties with tasks that require simultaneous processing of cognitive information.2

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2551397/pdf/bmj00615-0064a.pdf

 

Source: Shepherd C. Illness behaviour in the chronic fatigue syndrome and multiple sclerosis. Disentangling common characteristics is not so easy. BMJ. 1995 Oct 21;311(7012):1093. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2551397/pdf/bmj00615-0064a.pdf

 

Illness behaviour in the chronic fatigue syndrome and multiple sclerosis. Choice of multiple sclerosis as comparison condition was inappropriate

Comment on: “Abnormal” illness behaviour in chronic fatigue syndrome and multiple sclerosis. [BMJ. 1995]

 

EDITOR,-Peter Trigwell and colleagues compared patients with the chronic fatigue syndrome with patients with multiple sclerosis and report similar responses on Pilowsky’s illness behaviour questionnaire.’ There is accumulating evidence that the chronic fatigue syndrome is a functional disorder, with psychological, social, and physical factors implicated in its cause, whereas in multiple sclerosis the primary cause is physical. Wood et al compared patients with the chronic fatigue syndrome with patients with various muscle diseases and found a threefold increase in psychiatric diagnoses in the group with the chronic fatigue syndrome.2 Wessely et al describe an important prospective cohort study and conclude that common infections play little part in causing the chronic fatigue syndrome but that both previous psychological disorder and previous fatigue are associated with its development.3

We agree with Trigwell and colleagues that illness behaviour is highly relevant to the chronic fatigue syndrome, but we share their reservations about the particular method of assessing this. We also suggest that the choice of multiple sclerosis as a comparison condition was inappropriate. Multiple sclerosis, in contrast to muscle diseases, follows a relapsing and remitting course, often manifests sensory (subjective) rather than motor (objective) signs, and might therefore lead to illness behaviour that is abnormal, albeit for different reasons from those that might apply in the chronic fatigue syndrome.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2551396/pdf/bmj00615-0063c.pdf

 

Source: Campion PD, Dowrick CF, Edwards RH. Illness behaviour in the chronic fatigue syndrome and multiple sclerosis. Choice of multiple sclerosis as comparison condition was inappropriate. BMJ. 1995 Oct 21;311(7012):1092-3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2551396/pdf/bmj00615-0063c.pdf