Success! FDA Commits to Stakeholder Meeting…

July 2, 2012

Posted by Cort Johnson

YOUR VOICES MADE THE DIFFERENCE 

We are very happy to announce that during a conference call, Dr. Janet Woodcock, Director of Center for Drug Evaluation and Research at the FDA, made a commitment to the ME/CFS community to hold a Stakeholder Meeting

We’ll let you know more as the meeting and agenda for the meeting develops.

In the meantime pat yourself on the back and thanks for your support!  

Working together we can make a difference for ME/CFS 

10 comments

{ 10 comments… read them below or add one }

Denise July 2, 2012 at 1:49 pm

Thank you to everyone who added their voice and helped us get this meeting!!!

And many thanks to everyone who is working on meting plans and agenda!

Let's keep working together so that we can accomplish more things like this!

Cort July 2, 2012 at 1:57 pm
Denise

Thank you to everyone who added their voice and helped us get this meeting!!!

And many thanks to everyone who is working on meting plans and agenda!

Let's keep working together so that we can accomplish more things like this!

This has the potential to be a big (big) breakthrough for ME/CFS. With Ampligen (still) in the pipeline, studies beginning in Rituximab and the CAA's Biovista project promising new drug possibility, the idea of a streamlined approach to FDA drug approval is very exciting….Congratulations to everybody who lent their time and effort for this.

Nielk July 2, 2012 at 3:18 pm

This is a great example where we can see the direct effect of pulling our resources together to achieve success.
I congratulate everyone involved for a job well done.

ggingues July 2, 2012 at 5:20 pm

I waxed and waned on this advocacy.

GG

PS Hopefully this leads to something fruitful.

Bob July 2, 2012 at 7:48 pm

Great result! Thank you to everyone involved :)

satoshikasumi July 2, 2012 at 9:15 pm

Dear FDA,

Why the #@*! have you not granted approval to Ampligen!?

Yours truly,
The patient community

Cort July 3, 2012 at 8:38 am

This took three separate letters and a sustained effort over time… what some other advocacy attempts have lacked. I also believe that Dr. Woodcock was honest what she said in one of her talks that she was committed to helping the needs of people with chronic illnesses. I imagine it was a combination of things; persistent effort and an FDA official who understood where we were coming from…

Of course the proof is in the pudding……We'll see how the meeting and the agenda for the meeting evolves.

ggingues July 3, 2012 at 9:36 pm

I wonder if the Obamacare being held up by the Supreme Court had anything to do with it? They probably want to seem responsive to people, as much as possible and avoid any negative attention in regards to health care and the govt'.

right?

GG

SpecialK82 July 4, 2012 at 8:44 am

It was announced in the CFSAC that there are eight drug applications for CFS (one being Ampligen) – isn't that crazy, who would've guessed!! :)

Maybe this will help boost them all – fingers crossed.

taniaaust1 July 5, 2012 at 3:08 am
SpecialK82

It was announced in the CFSAC that there are eight drug applications for CFS (one being Ampligen) – isn't that crazy, who would've guessed!! :)

Maybe this will help boost them all – fingers crossed.

Does anyone know what the other drug applications for CFS are? Hearing there are 8, really surprises me.

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