Editor's Choice | This Week in BMJ | Press releases

BMJ No 7113 Volume 315 Letters Saturday 11 October 1997 Chronic fatigue syndrome in children Patient organisations are denied a voice Editor, Action for ME is one of the two patient support groups referred to in 'editor's choice' in the issue of 7 June. The organisation, which represents 8,000 members, accepts that any illness can have both physical and psychological components. In fact, for the past five years it has offered psychological support in the form of professional telephone counselling, and our journal has carried numerous articles testifying to a more complex understanding than the editor implies. What we have a problem with, however, is some medical journals' overemphasis on psychological factors when they refer to myalgic encephalomyelitis. Provocative features about hysteria and wandering wombs have not helped.(1) Because of the possibility of cognitive malfunction,(2) we believe that getting better is more complex that letting go of 'symptom dependency' and 'therapeutic nihilism' - terms that are frequently used in research attempting to show that abnormalities are not components of a primary pathological process but are secondary to behavioural aspects of myalgic encephalomyelitis, such as reduced physical activity. One of the problems facing patient organisations is that the dialogue with the medical profession is conducted largely via the media. Through the ME Alliance, which represents four national charities involved with myalgic encephalomyelitis, we asked to be consulted during the preparation of the royal colleges' report(3); our request was ignored. Since publication of the report, our request for a meeting has been denied. Is it any wonder that we 'use' the media in an attempt to have a voice? Action for ME's web page - http:/www.afme.org.uk - contains the ME Alliance's response to the royal colleges' report, and this response is available from Action for ME on request. Gill Jacobs Director, Action for ME 7 Priory Road, Wells BA5 1SR References 1 Richmond C. Myalgic encephalomyelitis, Princess Aurora, and the wandering womb. BMJ 1989;298:1295. 2 DeLuca J, Johnson S K, Ellis S P, Natelson B H. Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease. J Neurol Neurosurg Psychiatry 1997;62:151. 3 Joint Working Group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners. Chronic fatigue syndrome. London: RCP, 1996. (CR54.) Home | Current issue | Past issues | Classified ads | Career Focus | Feedback Collections | About this site | About the BMJ | BMA | Medline