Tuesday, June 09, 2009

Sounds very promising

Everything has to start somewhere, and I think this is a very good and promising start.  
The original article can be seen HERE

Here is a little snippet to whet the appetite.  Follow the link above for more of the article.

European Think Tank Forms to Generate Research Establishing ME/CFS as Organic Illness

“More than 5,000 research papers…show that ME has an organic basis…[yet] it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research." – Prof. Kenny De Meirleir

Ten leading scientists in Europe - members of the nonprofit European Society for ME (http://esme-eu.com) - have formed a Think Tank for ME and will hold their first meeting with a press conference Saturday, June 13 in Stavanger, Norway. (See Scientific Panel Member Listing, below.) They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there is a lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.

Last year's winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, 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." Montagnier, one of the discoverers of the HIV-virus, is a supporter of the Think Tank.

Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be €20 billion annually.

Educate Professionals
An important part of the Think Tank's mission is to spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients' quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states, "There is a total lack of knowledge and understanding about this disease in the healthcare system. We wish to use our knowledge to educate and train doctors, therapists and other healthcare personnel so they can better understand how to manage an ME-patient."

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