Date sent: Fri, 10 May 2002 CFS/ME Report -Correspondence Lancet The Lancet May 11th Correspondence ------------------------ (Jane Colby; Dr Chaudhuri; Judith Prins et al) Chronic fatigue syndrome and myalgic encephalomyelitis Sir--In their Jan 12 Commentary on the chronic fatigue syndrome and myalgic encephalomyelitis (CFS/ME) report published on Jan 11, 2002, by the Department of Health, Christopher Clark and colleagues (1) give an excellent overview of its conclusions, but do not mention the huge steps made in recommendations for children with these disorders. Children with CFS/ME have frequently been refused wheelchairs, orange badges, and other assistance lest they become dependent on these aids. The report is unequivocal: "wheel-chairs can increase independence . . ." and "the notion of 'once in a wheelchair, never out' is prejudicial". The report also states that nearly all children who are severely affected and many who are moderately affected will require home tuition, distance learning, or both. Children are commonly told to attend school for social contact, but schools these days can be pressurised, academic hothouses, where the physical and intellectual stress is unsuitable for many healthy children, let alone those with a disabling illness that affects the brain and central nervous system. Repeated relapses typically occur, undermining doctors' medical management and the child's achievement. Education can be more efficiently given via home tuition or distance learning until the child becomes strong, with social contact provided separately. Patients and clinicians have been subjected to many myths about CFS/ME. Research now shows that inappropriate exercise can exacerbate the illness, (2) and that the theory of deconditioning on which much cognitive behaviour therapy for CFS/ME is based does not match up with objective measures of physiological functioning. (3) Research quoted in the new report has also shown that 51% of all children on long-term sickness absence in a studied school population of 333 000 had been diagnosed as having CFS/ME, (4) overturning the myth that the disorder is extremely rare in children. One family was confidently told their son could be cured by intensive treatment in hospital with parental visiting at the hospital's discretion. This promise was mythical; the report states very clearly that nothing is, as yet, curative. Doctors and patients can now come together, avoiding the anger that arises from feeling under threat. Patients should no longer blame doctors for being unable to cure them or for not knowing all the answers, and doctors should not blame patients for not recovering. We must all have confidence in the self-repair system of every human being and do all we can to facilitate and support it through the long endurance test that is CFS/ME. Jane Colby Chief Medical Officer's Working Group on CFS/ME (Children's Group), Tymes Trust, PO Box 4347, Stock, Ingatestone CM4 9TE, UK (e-mail:jane@y...) 1 Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S. Chronic fatigue syndrome: a step towards agreement. Lancet 2002; 359: 97-98. [Text] 2 Lapp CW. Exercise limits in the chronic fatigue syndrome. Am J Med 1997; 103: 83-84. [PubMed] 3 Bazelmans E, Bleijenberg G, Van Der Meer JW, Folgering H. Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity. Psychol Med 2001; 31: 107-14. [PubMed] 4 Dowsett EG, Colby J. Long-term sickness absence due to ME/CFS in UK schools; an epidemiological study with medical and educational implications. J Chronic Fatigue Syndr 1997; 3: 29-42. [PubMed] ============================================= Sir--The Chief Medical Officer Working Group's report on CSF/ME, discussed by Christopher Clark and colleagues, (1) was a much welcome step because it formally recognises this chronic disabling disorder while acknowledging the need for dedicated health-care provisions and new research in this area. However, the report also falls short of certain expectations. Most importantly, it does not address the issue of using the diagnostic label CFS/ME appropriately for case selection. Clark and colleagues suggest that the conjoint use of the terms CFS and ME was a measure of respect for each other's views. To me, it is a necessity simply because chronic fatigue is a symptom not a disorder, and the label CFS selects a heterogeneous population. In my practice, the designation CFS/ME identifies patients with a fatiguing illness due to a neurological disorder, (2) similar to postpolio fatigue or multiple sclerosis. Patients with myalgic encephalopathy are clinically distinct from those with chronic fatigue due to psychiatric disorders, such as depression, phobic anxiety, or somatisation, who may also fulfil the diagnostic criteria for CFS. (3) Overlap exists in some cases, but distinguishing neurological from psychiatric patients is probably as important as the distinction between the broad classifications of chronic headache, dementia, or Parkinsonian syndromes not least because therapeutic approaches may differ. Therapeutic approach to CFS/ME is another contentious issue in this report rather than simply an unpalatable truth. I advise only pacing as a specific strategy for my CFS/ME patients, but should I now recommend cognitive behaviour therapy, graded exercise therapy, or both? I have my reservations for several reasons. Graded exercise therapy is associated with worsening of symptoms in nearly 50% of CFS/ME. (4) In addition, patients' satisfaction with cognitive behaviour therapy is rather low. (5) Secondly, these treatments have seldom been advocated in managing fatigue in neurological disorders. Third, their role for people with severe CFS/ME is unclear. Given the size of the long-standing and severely disabled CFS/ME population, these interventions may not offer realistic hope to many, and cost may not differ greatly from pacing, general rehabilitation, and regular contact with understanding physicians and therapists. It would have been useful for the parents and the carers of young CFS/ME patients to be reassured that the disorder would no longer be attributed to school phobia or misguided parenteral attitudes prompting referral to child psychiatrists or social services, respectively. In my experience, we are able to do little for symptomatic children who are forced to attend school and take part in physical exercise. I fully agree with Clark and colleagues that the claimed therapeutic successes of cognitive behaviour therapy and graded exercise therapy do not support a psychological cause of CFS/ME. However, the Commentary marks a welcome shift away from the view that postviral fatigue (CFS/ME) is a functional somatic syndrome and that cognitive behaviour therapy is effective in the treatment of CFS because it challenges patients' belief about the somatic attributions of their symptoms. Abhijit Chaudhuri Department of Neurology, University of Glasgow; and *Institute of Neurological Sciences, South Glasgow University Hospitals NHS Trust, Glasgow G51 4TF, UK (e-mail:ac54p@u...) 1 Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S. Chronic fatigue syndrome: a step towards agreement. Lancet 2002; 359: 97-98. [Text] 2 Chaudhuri A, Behan PO. Neurological dysfunction in chronic fatigue syndrome. J Chron Fatigue Syndr 2000; 6: 51-68. [PubMed] 3 Fukuda K, Strauss SE, Hickie I, et al. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994; 121: 953-59. [PubMed] 4 Severely neglected ME in the UK. London: Action for ME, 2001. 5 Shepherd C. Cognitive behaviour therapy in chronic fatigue syndrome. Lancet 2001; 358: 239. ================================================= Sir--Christopher Clark and colleagues' commentary (1) leaves the impression that the CFS/ME report represents a laborious compromise rather than an evidence-based statement of the art. The validity of the centre ground of the report should be seriously questioned, since six participants of the 16-member working party were unable to endorse the final version. Luckily, arguments against the biopsychosocial approach did not prevent the acceptance of graded exercise therapy and cognitive behaviour therapy as the best available strategies for CFS. This statement is toned down by the attention Clark and colleagues pay to the endorsement of pacing as an additional approach. Pacing is not a known therapeutic approach and, as they state, it has not been well defined. Why it should be the subject of research is unclear, since there is no clinical or scientific evidence for positive effects of pacing. So far, cognitive behaviour therapy and graded exercise therapy are the only interventions for patients with CFS that have shown positive results. (2) Clark and colleagues subscribe to this. However, we have deep concerns about one of their key messages about these treatments. We strongly disagree with the statement that no rehabilitation approach is intended to be curative. The intention of cognitive behaviour as practised in our research group (3) is definitely curative. With each CFS patient who enters cognitive behaviour therapy, the therapist discusses the individual and concrete meaning of recovery. As in other chronic diseases, the meaning of cure differs tremendously among patients. At the beginning of this treatment, recovery seems vague and unattainable for most patients with CFS. By contemplating life after recovery, a CFS patient is formulating his or her own personal goals for cognitive behavioural therapy. Under which conditions will a patient consider himself or herself to be basically healthy? Which activities would he undertaken in this situation? Too often therapists agree to far less concrete and less achievable aims, still within the scope of chronically ill patients. The art of cognitive behaviour therapy is to broaden the patients' vision to a future life as a well person. After reaching most of the personal goals, one of the last cognitive interventions in cognitive behaviour therapy is for patients to stop labelling themselves as CFS patients. In our opinion it helps them to strive for a cure, since a personal goal can never be completed if it is not aimed for. By questioning or denying the curative intentions of cognitive behaviour therapy, Clark and colleagues may deprive CFS patients from a potential cure. We agree that this treatment may not be a cure for all CFS patients, but it certainly has been for at least 35% of those who fulfilled the stringent criteria for recovery in our trial. (3) Recovered patients returned to work and other activities. Everyday bodily signs and symptoms were no longer interpreted as indicating CFS. Most importantly, these people no longer labelled themselves as having CFS. If this is not cure, what is? *Judith B Prins, Gijs Bleijenberg, Jos W M van der Meer Departments of *Medical Psychology and Internal medicine, University Medical Centre, PO Box 9101, 6500 HB Nijmegen, Netherlands 1 Clark C, Buchwald D, MacIntyre A, Sharpe M, Wessely S. Chronic fatigue syndrome: a step towards agreement. Lancet 2002; 359: 97-98. [Text] 2 Whiting P, Bagnall A, Sowden A, Cornell J, Mulrow C, Ramirez G. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA 2001; 286: 1360-68. [PubMed] 3 Prins JB, Bleijenberg G, Bazelmans E, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicenter randomised controlled trial. Lancet 2001; 357: 841-47. [Text] ~~~~~~~~~~~~~~~~~~~~~~~~~~