Journal of IiME Volume 2 Issue 2 www.investinme.org http://www.25megroup.org/Group%20Leaflets/G roup%20reports/March%202004%20Severe%20ME %20Analysis%20Report.doc VanNess JM, Snell CR. Stevens SR, Bateman L, Keller BA. FACSM. Using Serial Cardiopulmonary Exercise Tests to Support a Diagnosis of Chronic Fatigue Syndrome. Medicine & Science in Sports & Exercise: Volume 38(5) Supplement May 2006 p S85 http://www.acsmmsse.org/pt/re/msse/fulltext.00005768-20060500101259.htm;jsessionid=HV9HJwhtvwtNlGyB7vvTzBp DQt0xbKl87pnqpqrSnCTT9QlWCNXx!65375592!18 1195628!8091!-1?nav=search&fullimage=true VanNess and his coworkers (2006) have written the following: “Reduced functional capacity and postexertional malaise following physical activity are hallmark symptoms of Chronic Fatigue Syndrome (CFS). That these symptoms are often delayed may explain the equivocal results for clinical cardiopulmonary exercise testing (GXT) with CFS patients. The reproducibility of VO max in healthy subjects is well documented. This may not be the case with CFS due to delayed recovery symptoms. Conclusion: In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in CFS patients. However, the results from the second test indicate the presence of a CFS related postexertional malaise. It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in CFS patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.” Both the Association of British Neurologists and The British Psychological Society have criticised the NICE guidelines. Much of the research referred to, has been done Invest in ME (Charity Nr. 1114035) on patients with fatigue, but who do not have ME. The project has not been a cooperation where professionals and carers have taken part as it is described in the NICE guidelines. It is written that there was cooperation but the ones who have been involved as user representatives feel it was not real cooperation, but a form of masquerade. Considerable and documented contributions from users and experts who support the physical/organic cause of the illness have been ignored in a great degree. This and lack of real user contribution has also been confirmed in personal communication between organisations and Norway’s ME Association. The documents have been delivered to Competence Network co/Cecilie Daae. The NICE guideline’s definition of the illness is so wide that it includes almost everyone with unexplained fatigue, and not ME, diagnostic code G93.3. There is a clear need to subgroup patients who fall under the umbrella term CF (fatique syndromes). The use of overview articles as research methods, have clear weaknesses when studies of heterogeneous populations are included - the methodology critique doesn’t focus on the fact that the evidence base is very weak and the dropout analysis cannot find out who, and why, the dropout rate in a few studies is very high. See also the critique the Association has produced in relation to the Knowledge centre’s report. A lot of information on the physiological abnormalities was presented, but NICE has ignored this for the benefit of the ”biopsychosocial model” of the illness. This is a clear action which favours political strategies instead of medical and scientific evidence. The urgent need for biomedical research to uncover the underlying cause(s) have not been taken onboard. NICE has failed on several “Key Items” (Key Items 3, 5, 8, 10 and (continued on page 64) Page 63/74

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