Editorial on CFS was biased, inaccurate, and misleading

EDITOR—As a member of the chief medical officer’s working group on chronic fatigue syndrome, I consider that Straus has failed to appreciate the difficulties of deciding what constitutes evidence in an illness as uncertain and heterogeneous as this.1 He also misunderstood, or took out of context, some of the key conclusions and recommendations in the chief medical officer’s report.

Although it was agreed that evidence should not just be limited to the results of randomised controlled trials, the findings of the York systematic review were frequently cited. It was therefore disingenuous of Straus to state that information from this review did not influence the report’s conclusions about a wide range of therapeutic interventions. It did.

Equally, it would have been a serious omission if the report had failed to refer to the feedback from patients contained in three large surveys on attitudes to management, as well as two events where patients and carers met with the working group. All three surveys concluded that graded exercise as is currently being done made more people worse than any other intervention. Pacing, however, was found to be beneficial by around 90% of respondents. By dismissing such views as anecdote, Straus fails to appreciate that the Department of Health is encouraging patients to enter into a therapeutic relationship with the medical profession in the management of chronic conditions such as this.2

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/

 

Source: Shepherd C. Editorial on CFS was biased, inaccurate, and misleading. BMJ. 2002 Apr 13;324(7342):914. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1122848/ (Full article)

 

Graded exercise in chronic fatigue syndrome. Patients should have initial period of rest before gradual increase in activity

Erratum in: BMJ 1997 Nov 1;315(7116):1165.

Comment on: Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

 

Editor—We remain firmly opposed to exercise programmes that encourage patients with the chronic fatigue syndrome to increase their levels of physical activity progressively without making allowance for fluctuating levels of disablement. Nevertheless, we welcome Kathy Y Fulcher and Peter D White’s finding that an individually tailored programme can produce benefits in a carefully selected subset.1 We have concerns, however, about the way in which these results have been oversimplified in the media and may now be put into practice by health professionals with no experience of this approach to management.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127628/pdf/9361549.pdf

 

Source: Shepherd C, Macintyre A. Graded exercise in chronic fatigue syndrome. Patients should have initial period of rest before gradual increase in activity. BMJ. 1997 Oct 11;315(7113):947; author reply 948. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127628/

 

Giving thyroid hormones to clinically hypothyroid but biochemically euthyroid patients. Long-term treatment is being used

Editor—During the past six months I have become aware of an increasing number of patients with normal results of thyroid function tests who are being treated with a daily dose of up to 100 ìg thyroxine—mainly as a result of publicity being given in the lay media to a hypothesis put forward by Gordon R B Skinner and colleagues.2 These biochemically euthyroid patients invariably have several symptoms that are compatible with a clinical diagnosis of hypothyroidism, but many of them also have agreed diagnostic criteria for the chronic fatigue syndrome, a condition that does involve dysfunction of the hypothalamic-pituitary axis but not hypothyroidism.

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127520/pdf/9345188.pdf

 

Source: Shepherd C. Giving thyroid hormones to clinically hypothyroid but biochemically euthyroid patients. Long-term treatment is being used. BMJ. 1997 Sep 27;315(7111):814. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127520/pdf/9345188.pdf

 

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.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

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

 

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

 

Patients with a self diagnosis of myalgic encephalomyelitis

Comment on: Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).

The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf

 

Source: Shepherd C. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Oct 14;311(7011):1021. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf (Full comment)

 

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis

Comment on: General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-Although the precise pathoaetiology of myalgic encephalomyelitis remains the subject of debate, Shonagh Scott and colleagues are incorrect in asserting that “no evidence exists” of encephalitis. Buchwald et al carried out a large cohort study in which neurological symptoms, results of magnetic resonance imaging, and lymphocyte phenotyping suggested that the patients were experiencing “a chronic, immunologically mediated inflammatory process of the central nervous system.”2 More recently, Schwartz et al, who used single photon emission computed tomography, described abnormalities that were consistent with the hypothesis that “a chronic viral encephalitis” may be present.3 Furthermore, in the only postmortem study to have been published the polymerase chain reaction showed enteroviral sequences (compatible with coxsackie virus B3) in samples from the hypothalamus and brain stem,4 indicating that viral persistence within selective parts of the central nervous system may also play a part.

Given the uncertainties surrounding both the pathoaetiology and the diagnostic criteria for myalgic encephalomyelitis, it is not surprising to learn that self diagnosis produces difficulties in the doctor-patient relationship. The conclusions of and motives behind Scott and colleagues’ study must, however, be questioned in view of the fact that the fictitious patients had a list of vague symptoms that failed to satisfy diagnostic criteria for either a chronic fatigue syndrome (as defined by the International Chronic Fatigue Syndrome Study Group)5 or a postinfectious fatigue syndrome (as defined by current British criteria).6 Neither did the symptoms accord with those that patient support organisations would agree constitute a satisfactory diagnosis of myalgic encephalomyelitis.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/pdf/bmj00593-0058b.pdf

 

Source: Shepherd C. GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. BMJ. 1995 May 20;310(6990):1330. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2549699/

 

Chronic fatigue syndrome: a joint paediatric-psychiatric approach

Comment on: Chronic fatigue syndrome: a joint paediatric-psychiatric approach. [Arch Dis Child. 1992]

 

SIR,-While agreeing that physical, psychological, and social factors must all be taken into account in the management of this complex and controversial syndrome I would disagree with Dr Margaret Vereker’s statement that no organic pathology can be detected to account for any of the symptoms. This conclusion has been made without reference to a number of research papers describing persisting viral infection, neuromuscular abnormalities in both structure and function, and immune system dysfunction.

Gow et al using polymerase chain reaction techniques, have been able to demonstrate the presence of enteroviral genome in muscle biopsies from a significant number of patients (53%) compared with controls (15%). None of the healthy control group in this study had evidence of viral particles in their muscle, this was only found in those with colonic or breast malignancies. Precisely what cytopathological effect this intracellular virus is having within muscle remains open to debate. However, Behan et al have published electron microscopic evidence of structural damage to the muscle mitochondria along with type II fibre atrophy; this is a finding which is not normally considered to be consistent with simple disuse.

You can read the rest of this letter here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1793782/pdf/archdisch00632-0102a.pdf

 

Source: Shepherd C. Chronic fatigue syndrome: a joint paediatric-psychiatric approach. Arch Dis Child. 1992 Nov;67(11):1410. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1793782/

 

Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome

Comment on: Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome. [J R Soc Med. 1992]

 

As one who has long had a high regard for Dr Shepherd’s reasoned arguments in. the area of chronic fatigue syndrome (CFS) (September. 1992 JRSM, p 588), I am sorry to have to point out a logical inconsistency in his assessment of our work. Postinfectious patients do indeed form a sub-group of those with chronic fatigue syndrome. However, according to the ‘Oxford criteria’, in defining other groups of chronically fatigued patients, a diagnosis of previous infection is not necessary. Thus precipitating infection is not necessary for defining the syndrome itself, as we said in our paper.

Secondly, he might do well to note the way in which our results show energy and mood levels among CFS patients to be at their highest in the midmorning. This does not appear to be the pattern typically found among individuals with a primary diagnosis of depression, as we also point out. We regard this distinction as being potentially important and would hope.that the ME Association might wish to consider its implications. Unfortunately, this point was also missed in a recently unsolicited ‘abstraction’ of our work kindly prepared for us by the International Federation of ME Associations to be published in their Medical Update.

You can read the rest of this letter here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293708/pdf/jrsocmed00106-0076.pdf

 

Source: Wood C. Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome. J R Soc Med. 1992 Oct;85(10):650. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293708/