Waar Nederlandse "vermoeidheidskundigen" promoveren op het (bio)psychosociale verklaringsmodel
en de stelling dat gedragstherapie/"revalidatie" (CGT/GET) bewezen effectief is
(klik hier en
hier),
stellen vooraanstaande deskundigen in een persbericht n.a.v. de Mount Sinai-conferentie (zie onder)
dat CGT/GET niet alleen niet helpt, maar dat CGT/GET de symptomen kan doen verergeren en
dat ME/CVS veel meer te maken heeft met het immuunsysteem dan met "disfunctionele gedachten".
Press Release:
Incorrect government information could be hurting chronic fatigue syndrome patients,
new research finds
NEW YORK, NY (11/20/2013)
An untold number of New Yorkers, perhaps well over 100,000,
who have been diagnosed with
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
could be at risk of relapsing and exacerbating their condition
due to a course of a treatment suggested to them by the federal government,
according to groundbreaking new research.
At a medical conference today
sponsored by the New York ME and CFS Center at Mt. Sinai and
held at the New York Academy of Medicine,
researchers showed that a form of treatment called Graded Exercise Therapy (GET)
which has been lauded by the UK's National Institute of Clinical Excellence (NICE) and
recommended by the U.S. Centers for Disease Control and Prevention (CDC)
may not help ME/CFS, but actually can make it worse.
Unfortunately, the CDC has long been touting that
certain exercise regimens can help manage the disease,
even offering guidance on their website.
Dr. Derek Enlander, Dr. Eric Schadt, Dr. Miriam Merad, Dr. Christian Becker
and a team of researchers at Mt. Sinai Medical Center
have discovered new research on ME/CFS
that could change the way the disease is treated.
Their research shows that
the disease is tied to the immune system much more than originally thought.
A recent study showed patients can actually relapse
when they partake in excessive exercise,
and other therapies maybe more effective.
"We want to raise awareness about this disease,
how it affects the body and the best way to treat it,"
Dr. Enlander said.
"For too long, this disease has been misunderstood,
leading to a poor quality of life for far too many patients.
We hope to change all that."
Myalgic Encephalomyelitis was first identified in the mid-1950s,
by Dr. Melvin Ramsay of London's Royal Free Hospital,
after being suspected of outbreaks dating back at least two decades' prior.
What is thought to have been
an outbreak in Nevada's Incline Village in the mid-1980s,
mirroring one in rural upstate New York's Lyndonville,
led to the CDC officially recognizing a condition
reduced Chronic Fatigue Syndrome in 1988
following the elimination of the Epstein-Barr virus as a potential culprit.
The CDC has displayed an inconsistent track record ever since,
diverting millions of dollars earmarked for research in the disease
to other causes in a scandal uncovered some 15 years ago.
Recent estimates suggest that
hundreds of thousands of people in the U.S. suffer from CFS,
although the CDC is thought to have both underestimated the severity of the disease,
while overestimating the numbers,
as they have reported a disease prevalence of 2.54% in the U.S.
This figure is not accepted by experts in the field.
Using the more-accepted figure of 0.4%
would estimate the number of sufferers
in the New York City Metropolitan area alone at over a half million patients,
the majority of whom are likely undiagnosed.
The illness which afflicts women to a greater degree than men,
causes severe immunologic dysfunction, profound loss of energy
(sometimes referred to as fatigue,
though in many cases patients would report that this term is inadequate as a descriptor),
sleep disorders, neurological disturbances, pain, and other symptoms.
Underlying causes and treatments for CFS have been elusive,
but new research is shedding light on how the disease works.
http://www.americanbankingnews.com/2013/11/20/incorrect-government-information-could-be-hurting-chronic-fatigue-sydrome-patients-new-research-finds/
Mount Sinai ME/CFS Center of New York is pleased to announce
a conference on diagnosis, treatments and new developments
in ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)
WHERE:
|
New York Academy of Medicine
1216 Fifth Ave at 103rd Street, New York NY 10029
Parking between 102nd Street and 5th Ave
|
WHEN:
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Wednesday, November 20, 2013 at 11AM
|
CHAIRMAN:
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Derek Enlander M.D.
|
SCHEDULE OF EVENTS:
11:00AM
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Opening Dr. Derek Enlander
|
11:10AM
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Dr. Nancy Klimas
(New development in Immunology Relating to ME/CFS
|
11:45AM
|
Q & A Session
|
11:50AM
|
Dr. Dan Peterson
(Speaking of various methods for treating ME/CFS)
|
12:25PM
|
Q & A Session
|
12:30PM
|
Lunch
(Thank you to Hemispherex and Anatabloc for providing food)
|
1:15PM
|
Dr. Judy Mikovits
(Faux Paus and New Thoughts in Virology)
|
1:40PM
|
Q & A Session
|
1:45PM
|
Dr. Derek Enlander
(Diagnosis and Treatment)
from the British Doctor who named M. E. was Ramsay to Mello.
|
2:25PM
|
Q & A Session
|
2:30PM
|
Dr. Eric Schadt
(Genetic Research in ME/CFS)
|
3:10PM
|
Q & A Session
|
3:15PM
|
Panel Discussion
All Above Speakers Including
- Dr. Christian Becker, Pulmonologist
(currently studying post exertional relapse in ME/CFS.
- Dr. Frank Ruscetti, world-renowed Virologist
(formerly of the National Cancer Institute who has spent years working on ME/CFS)
|
3:55PM
|
Closing Dr. Derek Enlander
|
4:00 PM
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End
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