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

July 21, 2012

Posted by Cort Johnson

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.

5 comments

{ 5 comments… read them below or add one }

Rrrr July 21, 2012 at 9:30 pm

this is great news!

frenchtulip July 23, 2012 at 5:14 pm

Yes, great news! I guess it might be good to send the senators a thank you. I will try to do that tonight.

Fred1234567 July 26, 2012 at 11:15 pm

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!!!!!!!!!!!!!!

Cort July 27, 2012 at 7:34 am
Fred1234567

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..

Xandoff July 27, 2012 at 11:50 am

View attachment 3648 Senators Stand Up for ME/CFS………I never thought I see the day. Go USA!

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