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2009 A Year to
Remember
When it comes to the history of chronic fatigue syndrome (CFS), 2009 will be
considered a year to remember. Most
would agree that recent years, have been marked by scant signs of progress, if
not stagnation. Yet in 2009,
fractures in the skeleton of inertia and groupthink that has plagued CFS
research began to appear. It remains to
be seen whether these fractures will set CFS research on a stronger course, but
for the first time in a long time, a plentiful supply of new research pertaining
CFS is ongoing, giving many patients and families hope.
October: Whittemore-Peterson
Institute and Science Magazine
Of the events pertaining to CFS in 2009, none was more significant than the
published connection between CFS and the XMRV retrovirus in the October issue of
prestigious 'Science' Magazine.
Researchers at the Whittemore-Peterson Institute found that 67 percent of
patients with CFS -- using the more stringent Canadian and 1994 CFS research
definition -- tested positive for XMRV, a newly discovered retrovirus.
They found the virus in 4 percent of healthy controls.
Clinicians and advocates believe that new breakthroughs in CFS research will
have to be spurred by privately-funded efforts.
The Whittemore-Peterson Institute, which is based in Reno, Nevada is one
such effort. The Institute is
funded by the state of Nevada, the National Cancer Institute, and private
donations of patients families and philanthropists Harvey and Annette Whittemore.
Underlying the institute is a personal story, as the Whittemores'
daughter, Andrea, has been disabled with CFS for over 20 years.
The publication in Science magazine was a strong start for the Institute,
given that their facilities were slated to open in either 2010 and 2011.
Most CFS patients that I have spoken to believe that patience will be required
until more is known about XMRV and its possible role in CFS.
However, most sufferers of CFS feel that
any breakthroughs for CFS research will only apply to a subgroup.
Since many researchers conceptualize CFS differently and use different
definitions, untangling various XMRV studies will be difficult.
For now, most seem content to wait for the dust to settle.
April: CDC Five Year Plan
Input
For anyone who was granted a pass to attend the CDC's stakeholders
meeting in April, it was an eye -- some would say ear -- opening experience.
No less than 35 advocates, clinicians, and researchers spoke, and all
were seemingly in accord about the failure of the CDC's research program to be
open, objective, and establish working relationships with the greater scientific
community.
Why the CDC decided to hold this meeting was one of the more interesting
questions that came from the meeting.
Though the input gathered at the meeting was largely ignored, and the
meeting seemed to portray the agency's CFS program as insulated from the greater
scientific community.
That said, for anyone who listened to the meeting or spoke, it was a landmark
event, capturing comments from the who's/who of CFS research, clinical care, and
advocacy.
May: Another remarkable
development was that the CFS Advisory Committee recommended that Dr. Kathleen
Sibelius, who heads the Health and Human Services Department, install new
leadership in the CFS program and adopt a more open, collaborative approach.
The CFS Advisory Committee is a bipartisan committee that is comprised
primarily of the scientific and research community.
It has one patient community representative.
October: The last of the
year's CFSAC met. Perhaps the
most dramatic testimony came from Dr. Daniel Peterson, who presented the
findings published in "Science" magazine to the committee.
For Peterson, it was a return to the very health department that rejected
and downplayed his claims of a mysterious outbreak of CFS in Incline Village in
1984. If every there was a "full circle"
moment, this was it.
Dr. Mike Miller of the CDC stated that the Health Department had affirmed
the direction of the CFS research program, its leadership, and the five year
plan.
November: After 20 years
in the research pipeline, Hemispherx application for Ampligen was rejected by
the FDA. This decision did not come
as a surprise.
So, what predictions do I have for
2010? I expect for CFS
to be more visible in the coming months. I
also anticipate 2010 will see the publication of studies that both replicate and
reject the results XMRV study in Science magazine.
A new test for XMRV will be developed and be put into use by
virologists interested in studying the new virus role in human disease.
Beyond those tentative predictions, we will have to wait and see.
Best of 2010's,
Craig Maupin
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