Journal of IiME Volume 3 Issue 1 www.investinme.org The 4th Invest in ME International ME/CFS Conference 2009 (continued) We are in for a splendid conference which provides real hope for all who suffer from ME and all those who care for them. The medical and health community and, not least, medical and research administrators need to hear these stories and be prepared to learn from them, support biomedical research, and thereby serve the needs of sick patients. In the UK we need an institute comparable to the WPI. When will the cry of sick patients and their carers be heeded and action taken to make effective treatment(s) available? When will money be allocated for biomedical research that addresses the real nature of this illness. Much money has been devoted to support a model of ME that belittles patients, labels them with a diagnosis of a behavioural and mental disorder, and offers pacing (largely commonsense to people with any chronic illness), cognitive behavioural therapy, CBT, which even its strongest advocate state is “not remotely curative”, and of doubtful efficacy, graded exercise therapy, GET, which makes many patients more ill (confirmed by biological studies), coupled with antidepressants which may provoke chemical sensitivities and are not necessary since many patients are not depressed. This conference once again provides solid biomedical evidence which cannot continue to be ignored by health services increasingly wedded to an ideological, anti-clinical, and anti-scientific view of an illness that is now better understood and for which effective treatments following careful diagnosis are available. Enjoy it! Spread the message, challenge the bureaucrats, in Government, the NHS, and MRC and reclaim this field of medicine for both present and future patients. Malcolm Hooper May 2009 Invest in ME (Charity Nr. 1114035) Page 59/76 OSLER’S WEB To welcome Hillary Johnson to London we would like to highlight the later version of Osler’s Web. This has been updated by Hillary. From the review by Maryann Spurgin at http://www.cfids-cab.org/MESA/reviews4.html “..the most provocative portion of Johnson's discussion concerns the federal research establishment's attempt to manufacture a mental disorder out of a physical symptomatology. In meticulous detail, Johnson shows how bias in the choice of patients, value-laden selection of CFSrelated data and prejudicial allocation of research funds permitted government researchers to conclude that CFS was a psychiatric condition, or rather, something more akin to a behavioral problem. If Johnson is correct, then the government's conclusion is a classic illustration of the Thomas Szasz thesis: The concept of mental illness is often a political tool with which society dismisses its inconvenient members.” Ms Spurgin states that one of Osler's Web's strong points is its illustration of a propaganda system at work where studies citing negative findings in CFS were readily published, whilst studies reporting positive physiological findings were turned down.
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