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.
- Read the FDA’s response to advocates request for a Stakeholder’s Meeting
- Check out Phoenix Rising’s FDA Resource Center For ME/CFS for more on the push for the Stakeholder’s Meeting