Journal of IiME Volume 4 Issue 1 www.investinme.org Around Europe – European ME Alliance frequented blog in Spain) and Delirio (a digital artists collective that do social issues), on the topic of the lies of government, doctors and pharmaceutical companies. The idea is to reach out to the people with ME, MCS or FMS who are younger, more radical and feel that the patient’s association are too old fashioned for them (too full of middle-age housewives who only want to complain). This Manifesto that we have released will be in 9 languages. In Spain it is being taken up and published by news services, political magazines and being read at various May 12 events. The early response to the Catalan and Spanish versions of the Manifesto (“We Know They Are Lying”) is massive. Just the first day we had 1200 visitors and a lot of debate. We also have a Vimeo version with rock music. Current status of ME in Denmark The answers have been, that ME/CFS in Denmark has always been defined by CDC (Holmes et al), but since this definition was revised in 1994 (Fukuda et al), ME/CFS is considered identical to Chronic Fatigue Syndrome (CFS). A very interesting conclusion that seems to be shared by health authorities in practically most countries worldwide. Only a handful of doctors in Denmark know what ME is. Those who know claim that ME is identical to CFS. So here we go ... The Danish ME Association is, as one of its goals, committed to spread information and knowledge about ME – the original ME – and we have prepared medical information material from the original scientific papers on ME or medical professionals and have already sent out to some doctors, social workers and jobcentres. We have chosen to let the patients tell their GP, specialist or social worker about ME and our association and about our information material, so that the doctors can relate the material to a patient of theirs in stead of throwing it away without even having looked at it. In Denmark ME has been registered in our NIH's Classification of Diseases as a neurological disease – following the WHO ICD Classification to which DK has submitted. In spite of this very few people has been given the diagnosis ME during the last two decades. In 1992 the diagnosis ME/CFS (defined by CDC Holmes et al) was introduced by the first ME/CFS Association in Denmark, considering it to be identical to ME. This year ME/CFS has officially been declared a psychosomatic, functional illness. The patients will be offered treatment like CBT, ACT and GET, like recommended by the NICE Guidelines. A new diagnostic term has been invented by the Danish psychiatrist Per Fink and his colleagues at the University Hospital in Aarhus, Functional Disease Research Unit, called Bodily Distress Disorder, under which ME/CFS will be placed. Letters of protest have been sent to our Secretary of Health and our National Institute of Health. Invest in ME (Charity Nr. 1114035) They have all accepted that we send this material to their office, and through the feed-back from their patients we know, that they have been reading it, which in most cases is reported to have been of great help for both doctors and their patients. Also the very seriously ill patients report, that they have been treated with greater respect and understanding – something they have never experienced before. Right now we are in the process of contacting one of our local health spokesmen in order to bring this huge problem with ME and ME/CFS to the government's attention. Within the huge bunch of ME/CFS diagnosed patients, people with ME need to be located, separated and treated in the appropriate way by doctors, carers and social workers. There is still long way to go – but taking one step at a time we hope to get there. on behalf of the Danish ME Association Lajla Mark Chair Page 39/56
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