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FDA should give CFS patients access to Ampligen! --Online Petition

Sasha

Fine, thank you
Messages
17,863
Location
UK
The petition has been getting a lot of response so far. I've been contacted by several advocacy groups and there's a handful of campaigns starting up to promote the petition.

Robert Miller will personally be handing over the signature list to the appropriate parties in DC and is coordinating with Cort Johnson on how best to proceed.

It looks like we're gaining traction, but the petition will need an all-out effort to reach the kind of numbers required for media exposure. The ultimate goal would be Congress -- but we need your help!

Some Twitter and Facebook activity can go a long way. Ask people to retweet your calls to sign the petition. Reply to sceptics that Ampligen was voted safe. Ask your Facebook friends what they would want. You *can* make a difference...

Hi Freds - I'm assuming you're the petition's sponsor, listed on the petition page as, 'Fred. Neither patient, doctor, nor investor. I was touched by testimony.' I'm very grateful to you for setting this up, even without having a vested interest!

I've mentioned your petition in a comment on our current front-page article on Bob and Cort's email campaign on Ampligen - I hadn't been aware of your petition when I wrote it or I'd have put it in:

http://phoenixrising.me/archives/15031

Hope that helps get more signatures.

Thanks for giving more info and an update - that always encourages people!
 
Messages
12
By the way, to clarify my message above, the petition will be presented to the FDA and a Congress Representative if we have the numbers.
 

JohnnyD

Senior Member
Messages
206
Sasha, i don't see a way that I can modify the first post to update the link. Maybe a moderator could update the post...?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha, i don't see a way that I can modify the first post to update the link. Maybe a moderator could update the post...?

Hi Johnny - when you're logged in, you should see in each message that you write, below a dotted line, on the left, your name, the date and time you posted, and then options to 'edit, delete, report' the message. If you click on 'edit' you can modify your first post.
 

JohnnyD

Senior Member
Messages
206
Hi Sasha, I see those options on my message above, but not on the first post. Must be something special about the topic opener - I think a moderator is going to have to change it.
 

Nielk

Senior Member
Messages
6,970
Hi Sasha, I see those options on my message above, but not on the first post. Must be something special about the topic opener - I think a moderator is going to have to change it.

I believe that only a moderator can change the title of a thread.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Sasha, I see those options on my message above, but not on the first post. Must be something special about the topic opener - I think a moderator is going to have to change it.

Sorry, Johnny, I didn't realise that - I'll bring it to a mod's attention.
 
Messages
49
Location
Reno, NV
Sasha,
Thank you for getting this posted. We have over 2000 signatures, but we need more. So everyone please ask friends and family to sign on. I have asked family and friends that belong to church groups and other social groups to ask for their friends and co-workers to sign on. I have also sponsored the petition to get it in front of more eyes.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha,
Thank you for getting this posted. We have over 2000 signatures, but we need more. So everyone please ask friends and family to sign on. I have asked family and friends that belong to church groups and other social groups to ask for their friends and co-workers to sign on. I have also sponsored the petition to get it in front of more eyes.

Thanks for all your efforts on this, Bob - you're a hero!
 
Messages
12
We did well so far, but the sign-on rate has dropped in recent days.

I'd like to appeal to the community.

If you have an account on other boards or communities, it would be greatly appreciated if you could post about the petition there. If you're on Twitter or know someone with a large following, that kind of exposure is invaluable. The same goes, of course, for other Facebooks, printed press, etc. This includes audiences unrelated to ME/CFS.

An FDA "no" to Ampligen would significantly slow down investment in chronic diseases in general. They voted it safe. They're not contesting its effectiveness per se, they mainly insist on knowing which subset is affected more than others. We're not saying this doesn't belong in an efficacy profile, we're saying its added benefit doesn't outweigh the tremendous human and financial cost. It's an insufficient justification for keeping a potentially life-saving drug from bed-ridden patients with no alternative. Authorities in Canada and Brussels approved it 2 decades ago. Do you really think they're less diligent? Respect our right to decide with our doctors and provide incentive for sponsors to give drug companies the means to get those subsets refined.

We already know the subset that matters most. They're called ME/CFS patients.

Thanks for your support!
 
Messages
12
Sure.

Robert Miller will be leaving for DC next week to hand over a printed copy of the petition, most likely by January 25th (subject to change at his discretion). It's important we make a final push now.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sure.

Robert Miller will be leaving for DC next week to hand over a printed copy of the petition, most likely by January 25th (subject to change at his discretion). It's important we make a final push now.

Thanks, Freds - good to know.