ME Think Tank
Blazing a new trail, ten Europe-based experts in Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) have created a think tank. The scientists hope to jumpstart research that may uncover the mysteries of this crippling condition. The disease afflicts some 1 million US citizens and an even larger number of Europeans.
Though a significant portion of people are affected by ME, there is a dearth of research in the field. ME is spreading across populations at lightning speed, yet medical personnel don’t know much about how to treat the condition.
Professor Luc Montagnier, who was one of the first to discover the HIV virus and is a 2008 winner of a Nobel Prize in medicine, supports the think tank wholeheartedly 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.”
Belgium’s Professor Kenny De Meirleir comments, “There are more than 5000 research papers which show that ME has an organic basis with abnormalities in the immune, nervous and gastrointestinal systems and that it is influenced by genetic and environmental factors. Despite these findings, it has been close to impossible to initiate large-scale research to verify these facts and observations.” De Meirleir hopes that the think tank will lead to more research initiatives on this topic.
The newest biotechnology has led to a greater understanding of the nature of ME, but very little of this information trickles down to health care professionals. Because of this, many patients are not diagnosed or treated when many of their symptoms might be eliminated. It is estimated that ME is responsible for socio-economic costs to the tune of an annual 20 billion euros.
In addition to generating research, the think tank hopes as well to spread knowledge about the condition. ME has a greater impact on the public than other more well-known diseases such as multiple sclerosis and HIV, yet so little is being done to further understanding of the incapacitating condition. Meantime, those with ME experience a lower level in quality of life than do patients with cancer, lupus, HIV, and MS.
Norway’s Professor Ola Didrik Saugstad comments, “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.”
The European Society for ME (ESME) is responsible for planting the germ for the idea of the think tank. ESME is a new organization that hopes to organize research on ME as well as disseminate information about the condition to professionals. ESME board member Mrs. Catherine Miller-Duhen explains, “Until now ME organizations have been patient-based and only focused on the needs of the patients, so this is something completely new and unique. We are a group of professionals who want to stimulate new research in the field of ME and to help doctors and healthcare personnel to stay informed about the latest developments in diagnosing and treating ME-patients.”