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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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FDA should give CFS patients access to Ampligen! --Online Petition
Mr. Miller is in DC right now. We're at 3,080. -
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FDA should give CFS patients access to Ampligen! --Online Petition
This was changed to Tuesday (tomorrow) and I'll make every effort to get the most recent version to Mr. Miller on the day before delivery. So the delivered snapshot will most likely be in the Tuesday - Thursday range. -
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FDA should give CFS patients access to Ampligen! --Online Petition
I'll be sending a copy of the signature list to Robert Miller on Monday. No-one else will be getting it as far as I'm concerned. I'm considering directing other requests for the list to Mr. Miller, though we haven't discussed it yet. -
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FDA should give CFS patients access to Ampligen! --Online Petition
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. -
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FDA should give CFS patients access to Ampligen! --Online Petition
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... -
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FDA should give CFS patients access to Ampligen! --Online Petition
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. -
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FDA should give CFS patients access to Ampligen! --Online Petition
Hello Sasha. Yes, I'm the petition sponsor. Thanks for the comment -- and you're welcome, it's nice to help out. -
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FDA should give CFS patients access to Ampligen! --Online Petition
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... -
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FDA should give CFS patients access to Ampligen! --Online Petition
I'd like to stress the fact that the advisory committee voted Ampligen safe for approval. Meaning the safety profile is meeting their standards. I agree Hemispherx should do more. The submitted trials were too short, for one, but on the whole, enough is known about the drug for patients to... -
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FDA should give CFS patients access to Ampligen! --Online Petition
Ok I updated the petition text. Tried to keep it brief. Still too long -- though Danny is right, it's never black and white. If anyone has further thoughts, I'm all ears :) -
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FDA should give CFS patients access to Ampligen! --Online Petition
Hey that's great JohnnyD, I'd be happy to -- give me an hour or so, dinner's ready. Dannybex, thanks for the input, I'll include your "drug treatment" term. As for the ill effects, I do hope the text is clear later on there certainly are many patients experiencing side-effects. But afaik there... -
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FDA should give CFS patients access to Ampligen! --Online Petition
Hi there. I'm the one who started the petition. In response to LaurelW's question above, here are the two confusing votes in question. I added the square brackets in an attempt to best explain their difference as I understood it. "Has the safety of Ampligen [as implied by these particular...