I have commented elsewhere ( Millen et al 1999) that self-help and activist consumer groups have begun to give a voice to people with chronic illnesses and disability in a variety of settings (Zola 1991). Groups of CFS sufferers are some of the most recent to join these ranks. These groups provide a forum where people (those with the illness and those who care for them, or believe in their quest) have the opportunity to share and extend their expertise about managing the illness. Groups become politically active when they publicly voice their dissatisfaction with medical and other health and community services. Although the primary focus of such groups may be support for one another, many have moved into trying to influence the community and professional understanding of their problems. In Australia, New Zealand, the United Kingdom and the United States, CFS self help group, under a variety of names have adopted this approach.
Political strategies adopted by such groups can be very sophisticated. Fundraising may be undertaken to encourage research into the condition as well as sponsoring scientific conferences. Additionally groups may “adopt” sympathetic medical practitioners and thus further their careers, by providing them with research money, as well as the providing the research population for analyses. Such groups also establish relationships with pharmaceutical companies, to encourage development and trials of medications. All these activities influence the medical agenda. At the same time, members of such groups will seek opportunities to lobby politicians and health bureaucrats.
In the US and the UK, CFS groups have successfully used governmental processes, the media and research funding to attempt to legitimate the illness. In the UK, a Parliamentary Bill to bring awareness of the illness and its effects was presented in 1989, and an All-Party Parliamentary Committee on ME (myalgic encephalomyelitis, the name most commonly used for this illness in the UK) was formed to develop policy initiatives in relation to this illness (Annual Report of the ME Association (UK) 1990). In the US, a policy resolution on CFS was passed at the Governor's Association meeting in February 1990. This is only the second policy resolution on a health issue ever passed by this group (Heart of America News, Spring/Summer 1990). Twenty-three US states have declared CFS Awareness Days or Weeks. Self-help groups in different countries have also declared an international CFS day following collaborative efforts.
In the most recent five years concerns by ME/CFS patient support and political pressure groups have centred on three key issues, namely, (i) the name change and reclassification of ME/CFS (UK) and CFIDS(USA) to CFS and the possible change back internationally to a new generic name ( CNDS- Chronic Neuroendocrineimmune Dysfunction Syndrome)( Donna Dean, leader of the CFS name change working group- final version, 24 Oct 2001) and all this entails in the effects on clinical diagnosis and treatment; (ii) the shifting of the classification of ME/CFS on the WHO International Classification of Diseases (ICD-10)(1992), from present inclusion under the somatic diseases of the nervous system (G93.3) to mental and behavioural disorders ( F48.0)(selections from ME- leaders website ). The view is sustained that this shift has been provoked by several prominent psychiatric scholars allied to a dominant school of thought in the UK ( Wessely 1995, Wessely et al 1998) and followed in Australia ( Hickie et al 1996) ; (iii) the growing influence of an alliance between psychiatric views on CFS as a somatoform disorder and the need for graded exercise through a regime of Cognitive Behaviour Therapy (CBT) (Sharpe et al 1997; Sharpe 1998) These are the main contests for legitimation of ME/CFS facing the patient/ suffer groups at present in their quest for better recognition across the domain of western biomedicine.
However, in forming strategic alliances with sympathetic practitioners, researchers and politicians, politically active ME/CFS sufferers are able to have their own concerns heard. These will be issues beyond the bio-medical model. They include debates about the relationship between the proliferation of ME/CFS and work environments as well as the physical environment and the need to examine the benefits of allied and complementary treatments. Politically active CFS sufferers have formed alliances with other groups involved in the broad social and political processes influencing the bio-medical model generally. These include alliances with public health academics, occupational health researchers, sociologists of health and illness, environmentalists, unionists and other consumer groups
