estone-in-chronic-fatigue-syndrome-research/
atlanta mainstream
Advocates: Where was CDC for milestone in chronic fatigue syndrome research=
?
October 28, 2009 --
Looks like the CDC=E2=80=99s chronic fatigue syndrome research group, led b=
y Dr. William C. Reeves, may have some =E2=80=99splaining to do in Washingt=
on.
A possible research breakthrough =E2=80=94 the discovery of a correlation b=
etween CFS and a retrovirus related to the AIDS virus =E2=80=94 has fired u=
p the medical community in recent weeks. =E2=80=9CThis is going to create a=
n avalanche of subsequent studies,=E2=80=9D Dr. William Schaffner, an infec=
tious disease expert at Vanderbilt University, told the New York Times this=
month.
But will the Centers for Disease Control and Prevention play a role in that=
research? It hasn=E2=80=99t so far. Advocates have been pushing the Atlant=
a-based CDC for years to fund outside research into a possible viral explan=
ation for the debilitating disease, which afflicts as many as 1 million Ame=
ricans =E2=80=94 maybe more. Most of them are adult women.
The agency=E2=80=99s role in CFS research could come under the spotlight Th=
ursday, as a federal advisory committee begins two days of meetings where t=
he retrovirus findings will be at center stage. Advocates have called for h=
elp in packing the meeting to signal the committee, which makes recommendat=
ions to Health and Human Services Secretary Kathleen Sibelius, that they wa=
nt action now.
Reeves is a controversial figure in the CFS community, blamed by many for d=
ownplaying the severity of the disease and refusing to fund meaningful rese=
arch into a viral explanation. Just Google him and see for yourself.
Without naming Reeves, the HHS advisory panel in May called for his ouster =
and for federal health officials to =E2=80=9Cestablish progressive leadersh=
ip at the CDC that can achieve efficient meaningful progress in CFS researc=
h, clinical care and education.=E2=80=9D Minutes show the committee talked =
about whether to name Reeves in its recommendation.
=E2=80=9CWe have heard from the IACFS/ME President, who represents the scie=
ntific CFS community, call for new leadership within the CDC=E2=80=99s CFS =
program. We also learned that a CFS patient group has over 1,000 signatures=
asking for a change in leadership at the CDC=E2=80=99s CFS program. Furthe=
rmore, we continue to hear complaints from patients during public testimony=
about a number of issues involving the leadership at the CDC. In addition,=
a number of patient organizations have called for a change in leadership a=
t the CFS CDC program.=E2=80=9D
The action came after the world=E2=80=99s largest group of medical professi=
onals promoting CFS research made a similar recommendation =E2=80=94 in som=
ewhat blunter terms.
CDC=E2=80=99s research on the disease =E2=80=9Cneeds =E2=80=A6 a progessive=
, open-minded and dynamic manager with a sense of urgency commensurate with=
the pressing needs of the CFS community,=E2=80=9D wrote Dr. Fred Friedberg=
, president of the International Association for Chronic Fatigue Syndrome/M=
yalgic Encephalomyelitis.
Friedberg called on the CDC=E2=80=99s new leadership to give CFS research t=
he urgency it deserves as an =E2=80=9Cunacknowledged crisis.=E2=80=9D He cr=
iticized the agency=E2=80=99s five-year plan for addressing the disease as =
lacking substance and detail and noted that CDC sponsors no prevention or c=
linical treatment research.
In Fact, Friedberg wrote, CDC=E2=80=99s top researchers didn=E2=80=99t even=
show up at his group=E2=80=99s annual meeting this year: =E2=80=9CNoticeab=
ly absent from our 2009 meeting was the senior leadership from the CDC CFS =
research program.=E2=80=9D
Advocates also planned to present an online petition calling on the CDC to =
stop using an empirical definition for the disease, also known as the Reeve=
s 2005 definition, in its studies.
They contend that language is too vague, too subjective and prone to improp=
erly including patients who actually suffer from depression or another ment=
al disorder. As a consequence, they say, the CDC=E2=80=99s work is ineffect=
ive because it includes patients who have been misdiagnosed.
.
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