Een aantal vooraanstaande Europese ME-researchers slaan de handen ineen.
In aansluiting op de internationale konferentie van de Noorse ME-vereniging
(klik op onderstaand logo om het programma van de konferentie te bekijken)
zullen de deelnemers aan ESME (Europees Genootschap for ME: Kennis en Onderzoek)
een perskonferentie verzorgen om hun doelen en werkwijze toe te lichten.
Doelen van ESME (dus geen ESCFS) zijn:
het stimuleren van samenwerking tussen onderzoekers,
het bevorderen van onderzoek (herhalen van studies) en
het voorlichten van medisch personeel (en onze vermoeidheidsexperts?).
Een lovenswaardig initiatief waar we in de toekomst hopelijk meer van horen.
European Society for ME
Klik op onderstaand logo om de website van ESME te bezoeken.
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.
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 isa 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 schedule.
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.
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.
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 interviews.
On Friday the 12th of June,
a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients.
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:
Rebecca Hansen: +45-25713577, firstname.lastname@example.org
Svein Harvang: +47-90180049;
Anette Gilje: +47-95934023, email@example.com;
Mette Schoeyen: +47-47844671, firstname.lastname@example.org
Scientific Panel - ESME
An overview of the panel members
Prof. Dr. Med. Kenny de Meirleir:
Professor of Physiology, Pathophysiology & Medicine,
Internal Medicine & Cardiology, Free Univ. of Brussels.
Clinical expert in ME/CFS. Chair of Scientific Panel ESME 2009.
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.
PD Dr. Liv Bode:
Research Virologist, Robert Koch Institute, Berlin.
Specialist Human Borna virus infection.
Special expertise in development of immune assays & diagnostic tools.
Prof. Dr. Hanns Ludwig:
Professor of Virology, Free Univ. of Berlin.
Specialist in Animal & Human Borna virus infections & Herpes viruses.
Prof. Dr. Med. Mária J. Molnár:
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)
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.”
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.
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.
Dr. Med. Ana Garcia Quintana:
ME/CFS clinician & researcher, Unit for CFS, Delphos Medical Center, Barcelona.
Committee Member of CFIDS, USA.
Patron ESME launch meeting
Prof. Dr. Med. Babill Stray-Pedersen, Norway
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.
© ESME 2009