A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
The work of The European Society for ME
I received an email update this week on the work of the European Society for ME (ESME) that I thought you may be interested in. ESME is a Think Tank of top scientists in fields relevant to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) where the latest research and knowledge on the illness can be discussed and efforts made to propogate this to the medical profession to improve care for patients.
ESME was founded just last year and had its launch meeting on June 13th, in Stavanger, Norway. The launch was well covered by the mainstream media and the following are summaries of this coverage with links to full articles and videos.
ESME Press Summary 2009
SKY NEWS - UK
In connection with ESME's Think Tank meeting in Norway, Sky News aired a story on the 13th of June with the heading, "Could a Cure for ME be Near?" In the piece, Dr. Jonathan Kerr, a British ME-expert and researcher, expressed support for the idea of the Think Tank by saying: "It's really critical that scientists talk to each other more, collaborate more and do studies where they confirm each other's hypothesis and preliminary findings. Because we are in a time in this disease when we do have a lot of biochemical, biological abnormalities that have been found, but these all need to be validated and put in context of everybody else's work."
You can find the story here: http://news.sky.com/skynews/Home/video/Researchers-claims-cure-for-ME-may-not-be-far away/Video/200906215303486?lpos=Latest+Video_7&lid=VIDEO_1933822_Could+A+Cure+For+M.E+Be+Near?&videoCategory=Latest+Video
The press release for the launch of the new Think Tank was sent out on Newswire the week of the launch. In the press release, last year's Nobel Prize winner in medicine, Professor Luc Montagnier of France, gives his full support to the Think Tank and says: "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."
You can read the press release on Newswire here:
DAGBLADET - NORWAY
One of Norway's biggest national newspapers, Dagbladet, published a two-page article about the launch of the Think Tank in Norway with the heading, "Wants to solve the ME-mystery." In the article Professor Kenny De Meirleir of the Think Tank panel tells about his new test for discovering hydrogen sulphide in ME-patients. Another member of the panel, world-renowned scientist Professor Ola Didrik Saugstad, compares the current treatment of ME-patients to the disgraceful way lobotomy patients were treated a few decades ago.
The article can be found in pdf-version here:
A-MAGASINET - AFTENSPOSTENS WEEKLY MAGAZINE - NORWAY
Aftenposten is Norway's second largest newspaper with over half a million readers daily.
The article focused on Lars Th. Narvestad, 45, who contracted ME after a stay in San Francisco in the late 1980's. He was totally bedridden for a period of time, but is now a little better and is challenging the government to commit money to biomedical ME research. In the article there are several references to ESME's first Think Tank meeting in Stavanger. Professor Ola Didrik Saugstad, a Think Tank panel member, compares the treatment of today's ME patients with that of lobotomy patients decades ago and says: "When the full history of ME is written one day, we will all be ashamed of ourselves."
The Norwegian Minister of Health is quoted as saying: "We know too little; we do not do enough."
The article also quotes the statement issued by the Think Tank panel after the meeting in Stavanger, which says that ME is clearly a physical disease and that further biomedical research is needed.
IRISH MEDICAL TIMES - IRELAND
The Irish Medical Times printed a story about Dr. Derek Enlander's work with ME. Enlander is an ESME panel member who represents Ireland. In the article Dr. Enlander clearly states that ME/CFS is a physical disease and needs to be treated as one. He also says about the name CFS: "Chronic Fatigue Syndrome unfortunately was coined in America and the term creates great scepticism. Doctors don't understand the disease. Then it was given the pseudonym of ‘yuppie disease' in the popular press, which added to the problem."
You can read the full article here:
ESME state that their goals for 2010 are to "increase information flow in Europe, organize training conferences for MD's and other healthcare personnel and to facilitate research collaboration. The training conferences will be organized in cooperation with local ME associations, thus allowing ESME to benefit from local connections."
They also aim to establish ME/CFS clinics throughout Europe and encourage other doctors step forward and specialize in the field of ME/CFS.
ESME appear to be a ME/CFS that us patients can really get behind. They are focused on advancing research and the education of doctors about the illness, both of which are still very much needed. Please visit the ESME website to learn more and perhaps make a donation there if you like what you read.
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