do you know what annette whittemore's daughter's cfids

Discussion in 'Fibromyalgia Main Forum' started by moreinfoplease, Jul 2, 2008.

  1. moreinfoplease

    moreinfoplease New Member

    treatment is?

    Online, I watched a April 3 2007 broadcast of nevada newsmakers, which had a segment about the whittemore peterson institute for neuro-immune disease, an interview with whitmore (Founding Director), Dr. Daniel Peterson (Medical Director), and Judy A. Mikovits, (research director).

    In the interview, Whittemore referred to her daughter having to drive to receive IV treatments 2x/week as treatment for CFIDS.

    Does anyone know what treatment she is referring to?

  2. pprender

    pprender New Member

    I believe Miss Whittemore is one of the people who responded to Ampligen, which is infused. If she is
    still receiving it, she would be one of the longest
    term patients (some many years now).

    Her physician, Dr. Peterson, has been involved with ongoing trials. Unfortunately, most of us are priced
    out of the Ampligen trials and not everyone responds
    positively. Likewise, it is unlikely (but not impossible),
    that you might see him as a patient. Think years,
    not months.

    Everything you get here is going to be speculation.
    The Institute has a web page and phone number, and
    Dr. Peterson's office a phone, but don't expect a
    whole lot.

    Your best shot is probably looking for the opening of
    the institute anticipated in 2010. Sorry, probably not
    what you wanted to hear.

    Maybe I'm wrong.

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  3. Missizzy

    Missizzy New Member

    If you go to this link:

    you can read an article on Ms. Whittemore. It states that Ampligen has been helpful for her.

    Does anyone know the actual status of the institute? The webpage has been up for several years but I haven't been able to find any updates. Has construction even begun? Do they have doctors lined up? Can we get on a waiting list? Does everyone feel that this institute will truly become a reality?

  4. aftermath

    aftermath New Member

    The drug is, indeed, Ampligen.

    It was submitted for FDA approval late last year. If it is approved this year (with any luck), hopefully insurance companies will pay for it.

    Regrettably, the company involved with it appears to be the Keystone Cops of biochem. Hopefully they get it straight.

    With regard to WPI, ground was indeed broken on it (Mar 07). Timelines are saying 2010 for opening right now...
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  5. Dantes

    Dantes New Member

    Ampligen has been around for around 35-40 years.

    I hold no faith in it at all !

    A drug that cannot get FDA approval in 30-40 years is a waste of time.

    Also, there is no concrete data to prove anything positive about its use.

    There are a lot of numbers thrown out there, by the company that makes the stuff, but nothing independent that holds water.

    Also, most reports of improvement are anecdotal and cannot be verified.

    If Ampligen were worth it's salt, it would have been approved on its own merits 25-30 years ago.

    Some, on this board, think that Valcyte is a stretch.... Far from it when you compare it to Ampligen.

    Valcyte, at least, has strong studies going on with it. We know that it will at least help improve symptoms with a, yet to be determined, subset of patients.
  6. waltz

    waltz New Member

    It sounds like Foscarnet has only been tried on a few patients but that it seems to work and after a shorter treatment than Valcyte. I wonder why it hasn't been tried more. Is it even more toxic than Valcyte? Or just the inconvenience of IV? ?
  7. moreinfoplease

    moreinfoplease New Member

    I was just wondering what someone who is doing somewhat better (Whittemore said her daughter was able to work part time, which sounds good from where I am at now), and has access to the best treatment there is might be getting.

    I too have been checking repetedly for the status of the institute. It seems like the expected opening date has been changed several times. In my most recent search I saw info about a big fundraiser for it this fall. I assume one of the reasons for the delay is that they have needed time to raise more money. I am glad someone is doing something, but I wish it would happen sooner.

    If anyone gets more info about waiting lists starting please let us know.
  8. aftermath

    aftermath New Member

    I also do not put a tremendous amount of faith in Ampligen.

    Still, I think that it will be very positive for us if approved.

    If Ampligen were worth it's salt, it would have been approved on its own merits 25-30 years ago.
    Not if you agree with Dr. Peterson's logic displayed in a quote from years ago...

    "How can the FDA approve a drug for a disease the NIH says doesn't exist?"

    What I do see as somewhat convinving is that Annette Whittemore's daughter--who has access to the best care available for this illness--has given credit to the drug for her limited recovery. If it was worthless, the intelligent people treating her wouldn't be using it.

    Again, I don't see this as a magic bullet. Still, an FDA approved drug--even a marginally effective one--marketed for this illness would be a HUGE step for us with regard to the acceptance of this illness as "real" by more of mainstream medicine.

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  9. moreinfoplease

    moreinfoplease New Member

    It seems that now that there are medications approved for fibrmyalgia my useless HMO drs are much more eager to consider that as my problem

    Both the PCP, endo and neurologist have suggested fibro as a possibility. I wouldn't say they are knowledgable about or understanding of fibro but they are willing to acknowledge it as a real diagnosis and a possibility in my case.

    My problem is that I don't think I have fibro, I think I have CFIDS.

    And I think if these drs would just open their eyes and look at my symptoms, I think they would see that.

    So I am for anything that would help that to occur.