Too tired to go to the support group': A health needs assessment of myalgic encephalomyelitis

Abstract

Background: Myalgic encephalomyelitis (ME) is a mysterious and controversial condition. Debate has centred upon its causation, and the purchasing question - which services to commission for people with ME - has not been addressed. Methods: A health needs assessment was made of people with ME in Wakefield, based upon published (including grey) literature, and local informants. Results: Previous studies have mostly reflected institutional outbreaks; local needs will reflect community, sporadic cases but there is little information about these. The very wide estimates of prevalence (between zero and 57000 for a district the size of Wakefield) indicate a fundamental problem over the validity of the concept of ME. Four sets of health needs emerged from the literature and from local informants: a medical diagnosis, rest, specific treatments and social care. All four are highly debatable. Conclusion: There are no proven services or interventions which the health authority should purchase for people with ME. Purchasing, being a blunt tool for service change, is unlikely to improve health care given the disagreements over the condition. © 1996, Oxford University Press.