How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
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Study of Ampligen in Chronic Fatigue Syndrome

Discussion in 'Active Clinical Studies' started by Ember, May 1, 2013.

  1. Ember

    Ember Senior Member

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    http://clinicaltrials.gov/show/NCT00215813
    The inclusion criteria have changed:
    Locations:
     
  2. aquariusgirl

    aquariusgirl Senior Member

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    can u clarify....now only indicated for people diagnosed in the last 12 months?
     
  3. Ember

    Ember Senior Member

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    (> 12 months) means longer than 12 months.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Still self-pay?

    Sushi
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    yeah. sorry.. just looking at it. now on the hermxph website.
    i dont' know enof about the case definitions to understand the significance of any change in eligibility criteria....
     
  6. aquariusgirl

    aquariusgirl Senior Member

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    yep, still self pay & with the usual suspects..lapp, klimas, peterson, bateman, enlander, and some guy in NoCal called rajan patel
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    still can't combine it w/other drugs... AVs etc
     
  8. Ember

    Ember Senior Member

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    Detailed Description:
     
  9. August59

    August59 Daughters High School Graduation

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    I believe Dr. Peterson was using a combination of Ampligen and AV's on Andrea Whittmore. She was not able to tolerate Ampligen at typical starting dose, so she started low and titrated up. What I don't know is if the AV's were used in conjunction with Ampligen or if they were alternating the two.

    This is the best I can remember and I'm sure there were some differences from this, but it wasn't long after this that a request was made to give Andrea her privacy at that point. I never heard anymore as to how she was doing or anything.

    Hopefully someone can chime in and correct and update on Andrea's condition???
     
    vli and heapsreal like this.
  10. August59

    August59 Daughters High School Graduation

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    The FDA should at least partially fund a study on a drug that is in Phase III approval, but is out of range financially for most ME/CFS patient's who are usually on disability or just cannot afford approximately $1200 or $2000 a month (I cant remember which) for treatment. That probably would not happen since it is a for profit medication.
     
  11. *GG*

    *GG* Senior Member

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    Are there medications NOT for profit?

    GG
     
    vli likes this.
  12. August59

    August59 Daughters High School Graduation

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    I was thinking that the FDA would not help in anyway since this is will be a "For Profit" medication if I ever gets approved. It's probably not for profit now because the FDA has it classified as "Cost Recovery". Which hardly no one can afford.
     
  13. lnester7

    lnester7 Seven

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    Hmmm thinking about it, it will come down to price. Anybody has a clue of how often one needs to inject at the beginning then is it every 3 months or every other month, has to be monthly???....
     
  14. *GG*

    *GG* Senior Member

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    Not familiar For Profit vs Cost Recovery. I know I cannot afford to be part of the study, but I do have good insurance which might cover it, if it becomes available and I think it is worth the risk!

    GG
     
  15. August59

    August59 Daughters High School Graduation

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    It's about $1500 a month and unless you live very close, you have to move close to the treatment center while your receiving treatments and I believe it is for a minimum of 1 year!!

    Cost recovery just means that approved test sights can administer the drug, but the patient has to pay for every aspect of the treatment while receiving it.

    How do they get adequate people for testing when the cost is so high.
     
  16. *GG*

    *GG* Senior Member

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    Seems like a good question, perhaps there are enough people in the US with the financial assets. Unfortunatley my illness hit when I was just starting my career, so I do not have much wealth.

    GG
     
  17. vli

    vli

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    actually... i can't see Patel on the list anymore!!
     
  18. Sparrowhawk

    Sparrowhawk Senior Member

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    Right I just checked and he doesn't seem to be listed. I wo der if it is the same Dr. Raj Patel as the Lyme specialist out here.
     
  19. vli

    vli

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    I just called his office. He doesn't give amp anymore.
     
  20. Sparrowhawk

    Sparrowhawk Senior Member

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    Huh, interesting. Thanks for taking the initiative on that, wonder why he stopped.
     

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