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
{ 5 comments… read them below or add one }
this is great news!
Yes, great news! I guess it might be good to send the senators a thank you. I will try to do that tonight.
A great start but I am getting considerable relief from IV saline and oxygen. From a living death unable to talk/move/severe hypersensitivity to light and noise with spinal shocks/tingles to bed-ridden but able to move around in the bed, less sensitive and able to hold short conversations….
Hence I was very surprised that the Primer was silent on these aspects of treatment- the USA is currently leading the world in having a published and actually patient centred and useful treatment guide please add these treatments into the next reprint of the Primer.
Well done USA!!!!!!!!!!!!!!
I agree – hadn’t thought of saline – but what a big help for so many….let’s put it on the list of things to add. You might put your comments on our saline page http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/the-perils-of-standing-ii-drugs-for-chronic-fatigue-syndrome-mecfs-patients-with-orthostatic-intolerance/saline-solution-low-blood-volume-chronic-fatigue-syndrome-me-cf – so that others can get how effective it is..
View attachment 3648 Senators Stand Up for ME/CFS………I never thought I see the day. Go USA!
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