Journal of IiME Volume 2 Issue 2 www.investinme.org On the 22 August 2007 The National Institute of Health and Clinical Excellence (NICE) published guidelines for doctors, titled: Chronic Fatigue Syndrome / myalgic encephalomyelitis (or encephalopathy) - Diagnosis and management for CFS/ME in adults and children. Eight of the biggest ME organisations and more in the UK are strongly critical of the NICE guidelines and have declared them ’unfit for purpose’. They demand a considerable rewrite of the guidelines. We think, as they do, that the NICE guidelines will make the situation even worse for ME patients than it is at present. Some of the critical points include: Cognitive behavioural therapy (CBT) and graded/graduated exercise therapy (GET) are recommended as first line treatments for mild or moderate CFS/ME, and ‘Activity Management strategy’, which has elements of CBT and GET, for the most severely ill. These therapies have shown to have little effect (CBT) or are potentially harmful (GET). Large scale patient surveys in the UK show opposite results to the NICE guidelines. Apart from the outlined concerns, the key psychiatrists themselves, who actively promote these approaches say that CBT and GET cannot be described as ‘curative’ and/or have only a short term effect. ( Michael Sharp, AACFS, (now IACFS/ME) ) International CFS Conference, Cambridge, Mass., 10.-11. oktober 1998. S. Wessely, Editorial, JAMA 19.9.2001:286:11), Marcus JH Huibers + S. Wessely, Psychological Medicine, 2006:36(7):895-900). CBT and GET are not specific methods for ME/CFS because the cause is unknown. Many have been made worse by these therapies. (Devanur & Kerr 2006): http://www.cfidscab.org/rc/Devanur.pdf The NICE Guidelines did not want to include or Invest in ME (Charity Nr. 1114035) Norway’s ME Association The Norwegian ME Association, Norges Myalgisk Encefalopati Forening, was founded in 1987. It has established self-help groups in many counties, and once a year all the group leaders gather in Oslo for an 'update' seminar, and to share their experiences and get new inspiration. Its office is in Oslo, centrally located behind the university. It provides factual information about ME to lay and health professionals, and helps and supports people with ME and their families and carers. Twice a year, it publishes a newsletter, and a magazine "ME-News" with medical articles and useful information. It works both nationally towards health authorities and government, and internationally to raise awareness of the seriousness of ME. The association is also a member of the Norwegian Federation of Organisations of Disabled People (FFO). www.me-forening.no concentrate on research which actually documents the claims of the users. Results of cognitive behavioural therapy and graded excercise therapy from large scale patient surveys * 3074 patients (Jones, 2003) - CBT made no difference 55 % - CBT made worse 22 % - GET made no difference 16 % (continued on page 62) Page 61/74

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