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Rapid Responses: Rapid Responses published:
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More hype!
- Ellen Goudsmit (1 June 2002)
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Was this really news?
- Pauline Ovenden (4 June 2002)
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More naive research
- James A. Wolsey (9 June 2002)
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There are helpful treatments besides exercise and cognitive behavior
- Laurie E. Wilson (12 July 2002)
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Ellen Goudsmit, chartered health psychologist London TW11 9QX
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"Cognitive behaviour therapy and graded exercise are the only treatments that have proved to be effective for chronic fatigue syndrome and myalgic encephalomyelitis, say researchers” (News, 1st June). This claim emanates from the NHS Centre for Reviews and Dissemination (CRD) and relates to information in the latest issue of the Effective Health Care Bulletin. They are not researchers but reviewers of research. It’s an important point. It helps to explain a number of oddities, including the following: CBT and exercise programmes have not been found to be effective in patients selected using strict criteria for CFS. The one trial which did include such patients did not provide data about their number, and whether or not they also had co-morbid psychiatric disorders. (Many of those selected for these trials do). Virtually all the trials which found behavioural interventions to be helpful selected patients using the broadest criteria. There’s no published study showing that behavioural interventions on their own are effective for patients with ME (myalgic encephalopathy). The one relevant study on this subgroup showed it was no better than clinic attendance. The CRD can only support the claim that CBT helps people with ME on the presumption that CFS is identical to ME. But there is no evidence for that. Indeed, at least two studies have shown that strictly defined CFS isn’t even identical to broadly defined CFS. “… The review says that it is unclear … how different groups of patients respond”. I think we can be more specific than that. People with strictly- defined CFS and ME tend not to respond. Another fact. There are no data showing that behavioural interventions help patients with somatic symptoms, immune activation or muscle disease. The trials showing that CBT and exercise are effective only assessed two symptoms: fatigue and emotional distress. Hence suggestions about it being effective for everyone with CFS goes way beyond the available evidence. Research has shown that CBT is no more effective than counselling. The relevant randomised trial was included in the original review on which the bulletin is based (their reference 12) but is not included here. I wonder why? The research on pacing is not mentioned, though two trials were included in the original review (their reference 12). The statement that evidence for pacing is limited to patient reports and clinical experience is therefore inaccurate and was known to be inaccurate at time of writing. Those reviewing the document for the CRD did not include a single ME specialist, any person with a working knowledge of pacing, nor any professional known to be critical of CBT as a universal treatment for CFS. I am sure that this is just a coincidence but it could explain the apparent bias towards the psychiatric interventions. As a result of this bulletin, a few us of have begun a new campaign to remind doctors of the other side of CFS. We’re not anti-psychiatry (I’m a chartered health psychologist who trained in behaviour therapy and counselling). However, we are concerned at the increasing psychologisation of CFS and the hype relating to CBT. We’re sure health professionals prefer balanced information so they can make informed decisions. The information in this bulletin simply isn't balanced. We’d like to remind readers of the BMJ of the somatic symptoms which are not easy to explain in terms of misguided beliefs and deconditioning (visual disturbances, intolerance to alcohol, reduced blood volume etc). And we'd like to remind readers of the existence of subgroups like ME. The latest set of criteria for ME are listed below. Until a study shows that behavioural interventions are effective in patients meeting these criteria, perhaps professionals should continue to offer CBT as an adjunct for those who require it, those who have become anxious or depressed, or who are at high risk of these problems. That makes sense. That is evidence-based medicine. Offering it to every patient with ME is not. Clinical criteria for ME (Goudsmit 2002) 1. Generalised or localised muscle fatigue following minimal exertion with prolonged recovery time. 2. Neurological disturbances and variable involvement of cardiac and other bodily systems. 3. Impaired circulation. 4. Marked variability of symptoms in the course of a day and from day to day. 5. An extended course with a tendency to chronicity. ME can be diagnosed immediately. For research purposes however, a minimum duration of six months may help to differentiate ME from more common, transient post-viral syndromes. For further information on ME and references see: http://freespace.virgin.net/david.axford/me/me.htm Ellen Goudsmit PhD C.Psychol. 'Sick but not stupid' campaign. |
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Pauline Ovenden, Nurse (Retired). Leominster HR6 8JP
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Sir, Is there a secret campaign at the BMJ to promote CBT (News, June 1st)? Last week, the Effective Health Care Bulletin devoted its pages to the management of chronic fatigue syndrome (CFS). There was nothing new in the publication, as it was basically a summary of an earlier review by the same authors (1). Nevertheless, readers of the BMJ were given the impression that this was the third separate analysis of studies to support the use of CBT and exercise. Isn't this what they call spin? The headline proclaimed that CBT and exercise were the only treatments proven effective for myalgic encephalomyelitis (ME). However, none of the listed studies had selected patients with ME. The generalisation from CFS to ME relies on the assumption that any differences between the two are of no clinical significance. That is one hell of an assumption! It’s the equivalent of deciding that research on tension headaches is applicable to migraines on the basis that both populations report headaches. Visual disturbances? Nausea? Why bother with trivialities! In the past ten years or so, some have been very keen to portray ME as little more than fatigue, worry, aches and pains. Consequently the essence of the illness - the loss of muscle power following minimal exertion PLUS the delay in the recovery of muscle power after exertion ends - has tended to be forgotten. In contrast, the main criterion for the diagnosis of CFS is profound fatigue for at least six months which is not alleviated by normal rest. You don’t need training in statistics or epidemiology to work out that the criteria for CFS will select more patients than those for ME. Sofar, no study on CFS has found the delay in the recovery of muscle power which has been documented in ME (2). So with no evidence supporting the notion that ME is identical to CFS, and growing evidence that it is not, why don’t journals take a more cautious approach? Why this reliance on assumptions and generalisations and why, indeed, the sensational and misleading headlines? Should we not expect more objectivity from a scientific publication? P. Ovenden. 1. Whiting P, Bagnall AM, Sowden AJ et al. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA 2001; 286: 1360-8. 2. Paul L, Wood L, Behan WMH et al. Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 1999; 6: 63-69. |
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James A. Wolsey, retired not applicable
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As a long-term chronic fatigue sufferer and retired psychology lecturer who taught cognitive therapy and behaviour modification, I can confirm that I have tried cognitive therapy and graded exercise many years ago, and it does not work. Cognitive therapy is of course, useful for any depressed persons, and chronic fatigue is depressing. So it can benefit those who are depressed. It cannot do anything for the underlying physical and neurological problems that cause the fatigue. Hence, cognitive therapy is a red herring for most of us long term sufferers. What we need is serious research in to the underlying factors. James Wolsey |
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Laurie E. Wilson, Graduate Student, Cornell University 14850
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I have had chronic fatigue and fibromyalgia for 5 years. I did not get it diagnosed until two years ago. Up until that point I exercised as if I was not exhausted and in pain. During the first three years of my illness I had enormous sleep problems usually getting at most 5 hours of sleep a night. I felt completely weak and dizzy, the most comfortable times of my life were in a hot shower or lying in bed or on a couch. Over the past two years I have focused on paring down my activities, my diet, and have been taking two medications one for sleep and the other a low dose anti-depressant to help cope with the pain and limited lifestyle. Without those medications and without monitoring my diet I would not have been able to complete my graduate program where I am finishing up my MPA. I also agree that exercise is very important to keep your body strong and healthy, but I don't agree that medication should be dismissed as an ineffective treatment for chronic fatigue. Sincerely, Laurie Wilson |
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