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.
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.
“There are more than 5,000 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.
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.
Think Tank Meeting – Saturday June 13; Press Conference 4 pm
The first Think Tank meeting will be held in Stavanger, Norway on June 13. This will be immediately followed by a press conference at 4 pm, where the specialists will be available for comments and interviews.
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: [email protected]
Diagnosis & Treatment Training Conference – Friday June 12
On Friday June 12, a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients. It will be open to patients and relatives as well.
SCIENTIFIC PANEL MEMBERS – ESME
Belgium: Prof. Dr. Med. Kenny De Meirleir (2009 Scientific Panel Chair)
Professor of Physiology, Pathophysiology & Medicine,
Internal Medicine & Cardiology, Free Univ. of Brussels.
Clinical expert in ME/CFS. Chair of Scientific Panel ESME 2009.
Denmark: Prof. Dr. Bodil Norrild
Professor of Molecular Virology, Univ. of Aarhus & Copenhagen.
Head of DNA-Tumorvirus Group, Institute of Cellular &
Molecular Medicine (ICMM),
Univ. of Copenhagen.
Germany: PD Dr. Liv Bode
Research Virologist, Robert Koch Institute, Berlin.
Specialist Human Borna virus infection.
Special expertise in development of immune assays & diagnostic tools.
Germany: Prof. Dr. Hanns Ludwig
Professor of Virology, Free Univ. of Berlin.
Specialist in Animal & Human Borna virus infections & Herpes viruses.
Hungary: Prof. Dr. Med. Maria J. Molnar
Professor of Neurology, Clinical scientist.
Established Center for Rare Neurological Disorders – Clinical and Research
Center for Molecular Neurology, Semmelweis University, Budapest.
Pioneered diagnostic techniques in Neuromuscular/Neurogenetic disorders.
Organizer of biological banking system. (NEPSYBANK)
Ireland: Dr. Med. Derek Enlander
Internist, ME/CFS clinician & researcher.
ME/CFS/FM specialist, Mt. Sinai Medical Center, New York, USA.
Author of The CFS Handbook.
Italy: Prof. Dr. Med. Umberto Tirelli
Specialist in Oncology, Hematology & Infectious Diseases.
Director Department of Medical Oncology, Director Division of Medical Oncology,
Chief of CFS Unit, National Cancer Institute, Aviano, Italy.
Norway: Prof. Dr. Med. Ola Didrik Saugstad
Professor of Pediatrics, Director of Department of Pediatric Research,
Rikshospitalet Medical Center, Univ. of Oslo.
World-renowned Neonatal Specialist, WHO Advisor.
Spain: Dr. Med. Ana Garcia Quintana
Internist/Surgeon. ME/CFS clinician & researcher, Unit for CFS,
Delphos Medical Center, Barcelona.
Committee Member of CFIDS, USA.
Prof. Dr. Med. Babill Stray-Pedersen, Norway (Patron, ESME launch meeting)
Professor in Obstetrics & Gynecology, Faculty of Medicine, Univ. of Oslo,
Senior Consultant Rikshospitalet, Oslo University Hospitals.
Executive board member of the European Society for Infectious Diseases in Obstetrics & Gynecology.
Medical advisor of Norwegian Women’s Public Health Association.
Advisory board member of Reproductive Health, WHO.
Source: European Society for ME news release June 3, 2009, e-mail [email protected]