As metioned in my previous email, here is my "Day Two Dispatch" from
the IACFS/ME conference here in Ottawa.
Cheers,
James Deagle
Editor-In-Chief,
The Journey: Life & Living with ME/CFS and FMS
A publication of the National ME/FM Action Network
mefm.jamesdeagle@yahoo.com
----- Forwarded Message -----
F O R I M M E D I A T E R E L E A S E
September 23, 2011
Day Two Dispatch from the IACFS/ME Biennial International Conference:
Translating Evidence into Practice
September 22-25, 2011
Delta Ottawa City Centre Hotel, Ottawa, Ontario, Canada
This conference is organized by the International Assocation of
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) and
hosted by the National ME/FM Action Network.
After a successful opening day geared towards patients and the
general public, Day Two (September 23) narrowed its focus to doctors
and researchers. The day got underway with discussions of on Human
Gamma Retroviruses (HGRV) and their possible connection to ME/CFS.
(The retrovirus known as XMRV is thought in some circles to be the
culprit behind ME/CFS and fibromyalgia.)
Of particular note was a debate for and against the association of
XMRV with ME/CFS.
On the "for" side was Judy Mikovits, Ph.D. (Research Director,
Whittemore Peterson Institute, University of Nevada, Reno), who
pointed to two studies (in 2009 and 2010) in which XMRV was
successfully isolated from CFS patient blood samples.
In rebuttal, John Coffin, Ph.D (Department of Molecular Biology and
Microbiology, Tufts University, Boston), noted that the above results
have yet to be reproduced elsewhere. "Indeed, XMRV is now considered
by most virologists to be the consequence of a collection of artifacts
originating from endogenous murine leukemia viruses prevalent in
laboratory and wild mice."
Another highlight of the morning was a presentation by Harvey
Moldofsky, M.D. (Professor Emeritus, Faculty of Medicine, University
of Toronto), on the widespread musculoskeletal pain, fatigue,
depression and disordered sleep associated with Chronic Post-SARS
Syndrome. The effects of this syndrome are quite similar to those of
ME/CFS and fibromyalgia. The existance of this syndrome would seem to
imply the possibility that ME/CFS and fibromyalgia may themselves be
the result of a viral infection.
The afternoon was marked by a lively - and at times light-hearted -
debate on the neccessity of "tender points" in diagnosing ME/CFS and
fibromyalgia. (Testing for tender points is demanded by many insurance
providers in determining the validity of long term benefit claims.)
While there was technically a "for" and "against" side, neither were
fully convinced of the necessity of tender points.
Roland Staud, M.D. (Professor, University of Florida, Gainsville),
argued that tender points have value for research, but conceded that
"for clinical purposes, however, tender points seem to provide little
mechanistic information about an individual's pain and associated
symptoms."
He reiterated the point, saying that "tender points were meant for
research, but were taken over by insurance providers and clinicians."
In 1990, when the use of tender points came into vogue, it "was a
great advancement, but that's not to say we haven't moved on."
Daniel Clauw, M.D. (Professor of Anesthesiology, University of
Michigan, Ann Arbor), provided a lively retort with a slide
presentation entitlted Ten Things I Hate about Tender Points, and also
noted that it is easy for a subject to fake tender point symptoms. "I
don't know one good thing tender points have done" for diagnosis, he
said. "We have to push back when insurance companies ask us to do
things not based on science."
TODAY: Day 3 is now underway, and so far has included discussion on a
new international consensus definition for ME/CFS. More information
will follow in the next dispatch.
For further information on the conference, including the agendas,
please visit: http://www.iacfsme.org/.
For further information on the National ME/FM Action Network, please
visit: http://www.mefmaction.com/
Media accreditation is available for reporters from any recognized
news outlet. If you wish to send a reporter to this event, just have
them talk to either Rick Merner or Greg Filmore at the registration
table on "LL" (Lower Level) at the Delta Ottawa City Centre Hotel.
Please feel free to contact me if you have any questions or would like
contact information for any of the conference speakers. Dispatches for
the rest of the conference will follow.
James Deagle, Editor-In-Chief,
The Journey: Life & Living with ME/CFS and FMS
A publication of the National ME/FM Action Network
mefm.jamesdeagle@yahoo.com
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