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HEMISPHERX EXPANDS AMPLIGEN EARLY ACCESS PROGRAMME TO CANADA TO TREAT ME/CFS PATIENTS

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by John Mac, Apr 4, 2018.

  1. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    My opinion about Ampligen has always been that those who are currently taking the drug and wish to continue should be allowed to do so, but that the drug company that produces it should have to go through the usual procedures to show efficacy before new patients are brought in.

    I respect Dr Peterson, but when only one doctor in the US can say that he can predict responders, that’s a red flag for me. I have known patients who have mortgaged their homes and gone into debt to move to Lake Tahoe and pay the tremendous cost of this drug. I would not encourage anyone to do so until the new leadership of the drug company answers the questions that were raised at the FDA hearing and does further testing to show efficacy.

    I think that it’s great that Dr Hanson is looking at Dr Peterson’s accumulated data, but I believe that she’s just looking for clues to follow, not trying to evaluate the drug. Dr Peterson says that the blood work that he obtains from his patients indicates whether or not his patients are improving. I would like a second set of eyes on that data.

    For people like me who have been around for a long time, opinions about Ampligen vary tremendously. My first support group leader was a part of Dr Cheney’s first trial group. My own ME/CFS doctor looked into participating in an Ampligen trial back in the early ‘90s. He decided against it and I agreed with that decision. But we are both fairly conservative about medical decisions.

    In my old in-person support group days, we used to joke that we would only get excited about a treatment when we heard the magic words, “And then I went back to work.” I do not think that I know anyone who has participated in Dr Peterson’s Ampligen trials who has been able to discontinue Ampligen, go back their former lives, and continue to be healthy enough to work for longer than a year without relapsing.
     
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  2. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Is this information available online? The report by the FDA on Ampligen and why they thought more trials were needed?
     
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  3. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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  4. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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  5. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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  6. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Some of the analysis from 2012 just seems to be unfindable. Cort Johnson’s analysis is still obtainable, but he’s closely connected to Dr. Peterson and is not quite objective on this. It’s frustrating that so much information seems to be lost - I kept being sent to pages that no longer exist. No wonder I keep feeling like I’m hearing the same discussions decade after decade. No one can locate what was said before!
     
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  7. Perrier

    Perrier Senior Member (Voting Rights)

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    Dear Wilhelmina, yes, I also think that Dr. Hanson is looking to understand what the drug is doing to what aspect of the body so that some folks improve. I had heard that there were some folks who did go back to work. But I entirely agree with you, if one can say: 'i'm back at work" that is the measure of an effective drug. Thank you for all this information.
     
    MEMarge, Wilhelmina Jenkins and Milo like this.
  8. Kitty

    Kitty Senior Member (Voting Rights)

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    I've done this several times, but without any medication. It's possible for some patients to recover enough function to return to work for quite long periods if they're not severely affected. In a study for a drug that didn't work, I'd have made a great participant! ;)

    It usually ends up being impossible to carry on beyond a certain point, though, especially when ageing comes into the equation. I managed 38 years in the end (with a number of sick leaves), but was eventually defeated by the acquisition of a second fatiguing condition. :rolleyes:
     
  9. eva luna

    eva luna Established Member

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  10. Perrier

    Perrier Senior Member (Voting Rights)

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    The article is from over a year ago; but from the looks of what some folks say, a few have been able to recover some life on ampligen.

    (A general comment: The thing is that it is scandalous that things are not moving faster -- for all sorts of reasons: not enough money, not enough brain power, not enough of a sense of urgency, and no time line. Let us always remember that the conditions of the severely ill do really in some way resemble those imposed on citizens who have committed crimes: social isolation and solitary confinement.) So, folks will grasp at anything to get a bit of life: I often think of prisoners who in some prisons are able to stick their arms out through the bars on their windows, waving their arms hoping to feel the wind.)

    https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue

    (sorry about the odd and incorrect link; this one is correct)
     
    Last edited: Jan 13, 2020
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