** CFS HOPE FOR TREATMENT** FDA AMPLIGEN PETITION -Raise your voices!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by csavvy, Jan 3, 2013.

  1. csavvy

    csavvy New Member

    I am not a CFS sufferer but I have been greatly touched by the testimony of those who live with this terrible disease and I feel strongly about a recent petition that has been started in hopes for FDA approval on a treatment called Ampligen. Please note that I and have no invested interest in Ampligen, I simply believe that it is a possible light for those suffering in the dark.

    I am hoping to bring awareness of this petition so you can choose weather or not you want to sign it and have your voices heard.

    In my research I came across a lot of information about this drug called Ampligen that seems to have worked wonders for the very fortunate and small group of ME CFS patients who have had the opportunity to try it and could afford the expensive trials.

    I was so disheartened when I witnessed the review committee for the FDA on this drug as even though it was voted as a safe drug they didn't want to approve it. I so powerfully believe that it is those suffering with this disease who should have the right to choose their course of treatment. Just as a cancer patient can choose kemo, so should CFS sufferers have the opportunity to find some hope in their suffering. I would only hope that if I had ME CFS that I could choose this as a treatment option. It is ridiculous that there are no other options on the market!!

    If I had ME CFS I would at least want to know it was an option if nothing else worked. Just like Chemo for Cancer, it would be my last choice (as I would take a more natural approach) but at least a choice that I could make if I felt necessary. Ampligen has helped a lot of people who are sever sufferers of ME CFS regain some of their normalcy back and live more full lives. It seems criminal to me that this might not go through!

    *** Signing the petition shouldn't be about an individual (if you would take it or not, that's not the issue at hand) signing is saying that you want everyone to have the right to choose their own treatment options. The approval of Ampligen would mean that it could finally allow ME CFS to gain medical awareness on a greater scale and that a treatment option would be widely available and covered by insurance if it gets FDA approval. Finally allowing hope for ME CFS patients.***

    Please take a look at the petition and if you feel this is in the best interest of those with CFS, let your voices be heard!!!


    ipetitions.com/petition/ampligen/

    [This Message was Edited on 01/04/2013]
    [This Message was Edited on 01/04/2013]
  2. jole

    jole Member

    This medication is given IV, is too expensive for most of us, and has a lot of side-effects. They also don't know the long-term problems it might cause. For me, it wouldn't be an option because of the expense, since it's not covered by insurance. Plus I'm not one to jump the gun on new meds, especially since I already have a lot of symptoms that are side effects. It's just too early in the game yet. Just like so many of the other 'new' drugs for FM/ME, they don't work for everyone.

    However, I'm extremely happy for those that it helped in the trials. I think this drug has been used in Canada for a few years now. Anybody know if I'm right on this?
    [This Message was Edited on 01/04/2013]
  3. csavvy

    csavvy New Member

    The reason it is expensive and not covered by insurance is because it is not yet FDA approved. It is the cost to participate in the trials that is expensive. It has also been studied for 20 years and there are patients who have been on it consistently for over 10 as the benefits far outweighed the side effects.


    If I had CFS I would at least want to know it was an option if nothing else worked. Just like Chemo for Cancer, it would be my last choice (as I would take a more natural approach) but at least a choice that I could make if I felt necessary. Ampligen has helped a lot of people who are sever sufferers of CFS regain some of their normalcy back.

    Voting yes shouldn't be about an individual (if you would take it or not, that's not the issue at hand) voting yes is saying that you want everyone to have the right to choose their own treatment options and to get it approved so it is not expensive and will be covered by insurance.
    [This Message was Edited on 01/04/2013]
  4. roge

    roge Member

    great post csavvy. this is more about the severe patient having the right to choose to take a drug based on benefit/risk especially considering the panel said it was safe. Simply deplorable if the FDA doesnt approve this at least conditionally. Lets all sign this and get as many of our friends and faimily to sign and keep putting pressure on the FDA. This is also more than just allowing severe patients access to this drug at an affordable price but about a sign to the world and drug developers that me/cfs is real and serious and a first drug approved for this disease would help in that respect.