Monday, November 2, 2009

IACFS/ME president's testimony to CFSAC

[permission to forward or re-post]

To the ME/CFS Community:

I presented the statement below to the CFS Advisory Committee meeting in
Washington, DC, Oct. 29-30, 2009. The most urgent and important issue
right now is changing the leadership and direction of the CFS program at CDC, as $25
million in research funding is at stake. If this meeting does not change the
status quo then further advocacy actions will be necessary.

Fred Friedberg, PhD

As president of the IACFS/ME, I thank the CFS Advisory Committee for this
opportunity to present testimony on behalf of my organization. Six months ago
the three major CFS scientific advocacy groups, the IACFS, the CFIDS
Association of America, and this committee all recommended new, open-minded leadership at
the CFS research program in the Centers for Disease Control.
We commend this
bold and important action by the CFSAC.

Despite this unprecedented consensus, the CDC has shown no indication of changing its CFS program leadership. This is surprising given its track record to date. After 25 years (and over $100 million) of CDC research, chronic fatigue syndrome remains a stigmatized illness without substantive progress on public health policy or objective diagnosis and treatment. And their new 5 year $25 million plan fails to inspire any confidence that change will occur.

In fact, the consensus recommendation of these scientific advocacy groups was
based on dissatisfaction with the CDC's ill-conceived and impossibly
far-reaching 5 year research plan.
President Obama said in his inaugural address: The fundamental question of our
time, is not whether government is too big or too small, it will be whether it
works. The CDC is the world public health authority; It can certainly provide
more effective leadership in this poorly understood domain.

I am speaking not only for my organization but for several prominent
scientists whose opinions should be considered in our ongoing efforts
to effect
change. These individuals were unable to speak today.

Gudrun Lange was a member of the distinguished external review panel that in
2008 evaluated the CFS program at CDC; She asked me to read this quote:

"I am very disappointed that CDC has not been more proactive in implementing
important suggestions made by peer reviewers
. The committee recommended that
CDC, as the lead health agency dealing with CFS, establish closer
with other traditional public health agencies to further promote CFS as a
significant health concern. This includes using public service
announcements to
alert the public about CFS as an important health issue. In addition, it is
rather surprising that CDC has not shown any initiative to address obvious
research questions posed by the H1N1 epidemic. Why are we not surveilling the
population for post-infectious fatigue following H1N1?"

Distinguished UK scientist and geneticist, Jonathan Kerr, expressed the

Research output on CFS from the CDC in the last 5 years has been
principally in
the areas of gene expression and mutation. These studies used patients who did
not attend CFS clinics and were not diagnosed by recognised CFS clinicians
. A
microarray was utilised which did not represent the entire human genome (yet
such an array was available at the time). But, at no time were the microarray
gene profiles confirmed using real-time PCR, a standard procedure in
studies because the arrays are very sensitive but not very specific. The
findings of these papers do not lead anywhere and were not followed up by CDC.
They do not provide insights into pathogenesis, nor do they indicate candidate
treatment targets. The authors made no effort to explain their work in context
of the available CFS gene expression literature.

Although the CDC program has ignored the views of scientific advocacy groups,
their CFS program will not go forward without challenge
. Nor will this widely
supported protest be confined to one meeting of this committee. We
ask the CFSAC
to support us in our ongoing efforts. We respectfully recommend the following:

·    A continuing critical focus on the CDC chronic fatigue syndrome
program during
this and subsequent meetings until the leadership is changed.

·    A new scientific forum at the CFSAC that allows biomedical
scientists who wish
to speak at the meeting the opportunity to do so. This is important because
prominent scientists and clinicians who attempted to register to speak 3 weeks
in advance of this meeting were wait- listed.

·    Permission for non-US biomedical experts in CFS to participate in these
scientific forums. They are not permitted to speak now. Given that
there are so
few CFS experts worldwide, we need informed views to make informed

If we the CFS scientific community remain united in common purpose we can lead
the way to major new public policy initiatives and research programs that
advance the recognition and understanding of this still poorly understood

Thank you.

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