European experts launch think tank for chronic fatigue syndrome
10 June 2009
Ten leading scientists in Europe have formed a Think Tank for ME and
will hold their first meeting on the 13th of June. 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, but is unable to join the first meeting due to his
Ten internationally recognized scientists, many of them
prominent leaders in their respective fields of research, have
decided to do something about it. They have come together in
a Think Tank to promote cooperation among scientists from
various disciplines and to stimulate intense focus on
innovative and creative research. The first meeting is set in
Stavanger, Norway on the 13th of June.
"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," states Professor Kenny
De Meirleir of Belgium. "Despite these findings, 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."
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
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
New in ME
The Think Tank meetings are the brainchild of a new
organization, European Society for ME (ESME). This society
will focus on organizing research and educating professionals
in the field of ME.
"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," says ESME board member Mrs Catherine
The first Think Tank meeting will be held in Stavanger, Norway on the
13th of June.
On Friday the 12th of June, a conference will be held to train
healthcare personnel in the diagnosis and treatment of
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