Journal of IiME Volume 2 Issue 1 Rev ew o he “ wo day Exe c se estt”( (conttiinued)) Reviiew off t the “TTwo--day Exerrciise T Tes ” con nued 2. VanNess JM, Snell CR, Stevens S: Diminished Cardiopulmonary Capacity During Post-Exertional Malaise. JCFS 2008, 14(2):77-85. 3. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, Group ICS: The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994, 121:953-959. 4. Carruthers B, Jain A, DeMeirlier K, Peterson D, Klimas N, Lerner A, Bested A, Flor-Henry P, Joshi P, Powles ACP et al: Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition. diagnostic and treatment protocols. J Chronic Fatigue Syndrome 2003, 11(1):1-12. 5. Jason L, Bell D, Rowe K, Van Hoof E, Jordan K, Lapp C, A G, Miike T, Torres-Harding S, De Meirleir K. A Pediatric Case definition for myalgic encephalomyelitis and chronic fatigue syndrome. J CFS 2006, 13:1-44 www.investinme.org Person With ME Dear IiME, Thoroughly enjoyed reading April’s newsletter. Packed full of information and sensible opinions on all aspects of ME research. I agree with IiME that it is wise to be wary of the plan to “fertilise cross-disciplinary research activity in this field.” I believe that any attempt to co-ordinate research amongst researchers who promote that ME is the same as CF, under the guise of CFS, will not bring about any medical understanding of the cause and progression of the illness. I also believe that it would be ethically wrong to work in tandem with any psychiatrist, or follower, who works to the premise that ME is just another form of CF called CFS and that it should be researched, treated and managed as such. The MRC neither understands nor cares that ME sufferers will never forgive or forget the unnecessary suffering caused by the opinions of a few psychiatrists. If they did understand they would realise that it is quite a repulsive Facts on ME Before medical science discovered the aetiology of multiple sclerosis and Parkinson’s Disease, people afflicted with those disorders were subjected to medical dismissal and to charges of hysteria. Those with ME/CFS are suffering the same fate, because even though so much is now known about the pathology, precise causation remains elusive. Causation will continue to remain elusive as long as Wessely School psychiatrists advise the UK Government that no tests should be performed on those with ME/CFS, especially immunological and neuro-imaging, investigations which, when carried out elsewhere, jave already delivered evidence of the organic nature of the disorder. - as listed in the IiME Quotable quotes Booklet ) notion to promote the idea that our tormentors will now become our saviours. It is simply too late for the bad guys to become the good guys. (Will they admit that they were wrong all along?) When will the MRC, DoH, CMO and the NHS inform psychiatrists that they should not be involved in ME research at all? Until this happens ME research will continue to stagnate in the CF pool. On a lighter and more positive note, “Good luck” on May 23rd when IiME hosts the third ME conference. I look forward to ordering my DVD and learning about biomedical research into ME. - C Invest in ME (Charity Nr. 1114035) Page 23/34

24 Publizr Home

You need flash player to view this online publication