Thursday, August 2, 2012

Senators Stand Up for ME/CFS - Support Push For FDA Stakeholder Meeting

Senators Stand Up for ME/CFS - Support Push For FDA Stakeholder Meeting
Phoenix Rising

Thanks to Senator Robert Casey (PA) and his colleagues Senator Richard
Blumenthal (CT) and Senator Kay Hagan (NC)

At the end of June, Senators Casey, Blumenthal and Hagan sent a letter
to Secretary of Health Kathleen Sebelius requesting the FDA hold a
stakeholders meeting on chronic fatigue syndrome. All three Senators
serve on the Committee on Health, Education, Labor and Pensions which
oversees the FDA. The letter stated

"CFS/ME represents a significant unmet medical need, one that confers
on patients a lifetime of illness
. A stakeholder meeting would be of
great benefit, as it would offer an opportunity to examine existing
treatment protocols known to FDA, address how risk/benefit
determinations should be made in relation to CFS/ME treatments and
identify a path forward for regulatory science in this area."

Thanks again to the patient community for your emails and some brave
folks who met with numerous Congressional offices in Washington DC -
our voices have been heard. As you know, Dr. Janet Woodcock, head of
the Center for Drug Evaluation and Research, has committed to the
stakeholder meeting for ME/CFS.

We are grateful to these Senators for realizing our plight and
choosing to engage our health officials in finding solutions.

Thank yous can be sent to:

Senator Robert Casey

Senator Richard Blumenthal

Senator Kay Hagan

As of August 01, 2012 there are 537 electronic contact addresses (of
which 534 are Web-based contact forms), and 537 home pages known for
the 540 members of the 112th Congress. Contact information for other
congressional leaders can be found here:

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