Saturday, June 6, 2009

More on ME Think Tank

ESME European Society for ME

Scientific Think Tank for Mystery Disease

Experts Launch Think Tank for Mystery Disease

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 demanding

Treatable Disease

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
?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."

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 Miller-Duhen.

Press Conference

The first Think Tank meeting will be held in
Stavanger, Norway on the 13th of June. This will be
immediately followed by a press conference where
the specialists will be available for comments and

On Friday the 12th of June, a conference will be held
to train healthcare personnel in the diagnosis and
treatment of ME-patients.

Press conference: Saturday 13th of June, 4 pm, Press
room, Clarion Hotel Stavanger, Stavanger, Norway.
To register for the press conference and ensure
receipt of a press packet, please send an email to
Rebecca Hansen at:

Contact persons:

From ESME: Rebecca Hansen: +45-25713577, 

Svein Harvang: +47-90180049;

Patient contacts:

Anette Gilje: +47-95934023,

Mette Schoeyen: +47-47844671,

ESME website:


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