Friday, May 29, 2009

Doctors' Voices

From John Herd:

It is impossible to predict how the CDC will react to the recent
CFSAC and IACFS/ME recommendations. Whether the CDC acts upon those
recommendations or not, it will not take anything away from the
importance of what transpired at the CFSAC meeting yesterday.
Throughout the history of ME/CFS advocacy many of us have called for
ME/CFS doctors to take a more proactive role on the advocacy stage, to
speak out on key ME/CFS issues.

Their public voices have been needed in the dialogs about improving
how the health departments address ME/CFS matters. We have needed their
public voices on matters of the various health departments levels of
research funding and the types of research being funded. And we have
needed the credibility of their voices when possibly flawed and
negative biased agenda driven science threatens to undermine the kinds
of research and clinical care we need.

Their speaking out on advocacy issues can do more than help
patients. It can help increase levels of research funding, the types of
research funded and the tools necessary for them to offer  improved
clinical care to ME/CFS patients. In other words, doctors speaking out
can help improve their research and clinical care interests. We have
needed them to speak out on their own professional behalf.

For the past two decades though there has generally seemed to be in
the ME/CFS medical sector a view that such speaking out publicly be
left to the advocates. The usual reasoning has typically been that they
are too busy in their labs and clinical settings to do so.

Yesterday the ME/CFS medical sector resoundingly came out of the
closet, or more accurately their labs and clinical offices. They took a
very proactive role in trying to fix the broken governmental ME/CFS
system that profoundly effects their work and all patients. For that I
applaud them.

The CDC governs from within. It has ignored external input in the
past, even from the Department of Health and Human Services
administration and other DHHS agencies. Despite their tendency to steer
their own ship, what the CFSAC and IACFS/ME have done will be hard to
ignore. This is especially true if the office of the Secretary of
Health upon seeing the recommendations wants the matter cleaned up.

May all of our voices continue to harmonize in calls for changes that will improvement ME/CFS research and clinical care.

John Herd

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