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Peterson Reports Antiviral Effective in Treating “Severely Ill CFS Patients with HHV6 or CMV”

Discussion in 'General ME/CFS News' started by Ember, Apr 9, 2013.

  1. Ember

    Ember Senior Member

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    “These results show objective endpoints, subset selection, and recovery. There were complete responders and partial responders among severely ill CFS patients with HHV6 or CMV. These are encouraging results for this subset and further well-designed trials should be pursued to confirm them.” Dr. Dan Peterson

    By Cort Johnson
    April 9, 2013
    More: http://simmaronresearch.com/2013/04...mecfs-patients-with-hhv6-and-hcmv-infections/
  2. vli

    vli

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    May I use this opportunity to ask if ANYONE on vistide on this forum is willing to talk??? I was doing ampligen 2012, only saw partial success/couldn't afford to keep staying in NYC with that result not to mention that not being American, I had to move there from Asia to see dr Enlander for it, and left the US because my lease was up and I was in too big of a mess to move somewhere cheaper at the time. Before I left I desperately asked around for ANYONE who got vistide in the US but everyone I heard from was from Dr Peterson's--there was absolutely NO ONE else it seemed in the US who would give it. So I hope members will understand if I try to ask again whether there is anyone here who is also on vistide or knows someone who is--there is now a big possibility that I will return to the US but I would really like to hear more testimonies before making such a big move.

    Thank you.
    merylg likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    vli

    It is interesting that Peterson said that cmx001 is being fast-tracked for approval. That would make this class of drug much more available. Really hope it is approved.

    Sushi
    Tristen, merylg and jeffrez like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    probably off label for us, so probably expensive. Be good if its approved directly for cfs/me with viral reactivation.
    merylg, Sasha and vli like this.
  5. snowathlete

    snowathlete

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    Here is a thing about the fast-tracking

    And here is the abstract about Peterson's study:


    "Therapeutic potential of cidofovir (HPMPC, VISTIDE) for the treatment
    of HHV-6 and/or CMV infections in severely ill patients diagnosed with
    chronic fatigue syndrome/myalgic encephalomyelitis"

    Gunnar Gottschalk1, Isabel Barao2, Daniel Peterson1
    1Sierra Internal Medicine, Incline Village, NV, USA
    2University of Nevada, Reno, NV, USA

    Objective:
    Herpesvirus infections and natural killer (NK) cell
    dysfunction may be important in the pathogenesis of Chronic Fatigue
    Syndrome/Myalgic Encephalomyelitis (CFS/ME) in a subset of patients.
    Cidofovir has broadspectrum activity against many DNA viruses
    including the Beta-herpesviruses human herpesvirus 6 (HHV-6) and human
    cytomegalovirus (HCMV). In this study, we proposed:
    1) to determine the effect of cidofovir treatment on physical and cognitive
    functioning and NK cell function in CFS/ME patients with laboratory
    results suggestive of HHV-6 and HCMV infections; and
    2) to evaluate the tolerability and safety of Cidofovir treatment.

    Methods:
    From January 2005 to December 2012, we prospectively
    evaluated 65 severely ill CFS/ME patients who underwent Cidofovir
    treatment (intravenous; 5mg/Kg, every other week) in our clinic.

    Patients were tested for exercise tolerance (time on treadmill and
    oxygen consumption – VO2 Max) and signs of possible herpesvirus
    infection in blood via polymerase chain reaction (PCR) and antigenemia
    assays, before and after treatment.
    NK cell function was determined by a NK cell lytic unit (LU30) assay.
    The tolerability of Cidofovir was assessed by standard blood chemistry tests.

    Results:
    46/65 (70%) patients had a partial or full response to
    treatment. Of this group 27/46 (56%) presented with a full response to
    treatment and were able to return to work and/or daily activities.
    Increases in VO2 and in NK cell function were observed. There were
    6/65 (9%) patients who stopped taking the drug due to adverse events,
    5/65 (8%) patients who were “lost to follow up,” and 8/65 individuals
    (12%) who were non-responders to the drug. In general, Cidofovir was
    well tolerated.

    Conclusions:
    An expanded study is indicated to confirm these initial
    results and explore new combination therapies for the treatment of
    this subset of patients diagnosed with CFS/ME.

    Sounds promising, particularly because the drug has quite a broad spectrum.
  6. Ember

    Ember Senior Member

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    Thanks! Where is this published?
  7. maryb

    maryb iherb code TAK122

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    Does it say anywhere how long each patient was on the drug? Not 7yrs surely.
    vli likes this.
  8. vli

    vli

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    Yes this would be extremely helpful information.
  9. Ember

    Ember Senior Member

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    Sample Cases:
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  10. snowathlete

    snowathlete

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    not sure if it was published in a proper journal, or just in the HHV6 conference booklet, which is where i got the abstract from.
  11. vli

    vli

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    thx Ember for that but I'm not sure that's entirely representative though. Since he cited the time periods for two patients, I can also cite two Peterson patients who told me they had to be on Vis for MUCH longer than 24 wks, in one case twice as long, in another even longer. If two patients told me directly that they had to be on vistide longer than the above cases, I think that balances out the impression that "24 weeks does it".
    August59, merylg and snowathlete like this.
  12. Tristen

    Tristen Senior Member

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    I don't know all the stats about others on Vistide and in that study, but my impression was that not everyone was on the drug for the same length of time.....it's somewhere between 6 months and 1 year, depending on several factors of which I'm not fully privy. I was on it for a full year, which I'm pretty sure was the max.

    Be glad when the cmx001 is out because the Vistide tx is not only dangerous, but also very involved. For me, it was worth it.

    http://simmaronresearch.com/2013/04...mecfs-patients-with-hhv6-and-hcmv-infections/
    justinreilly, merylg and snowathlete like this.
  13. vli

    vli

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    In light of what presented in Paris, could anyone (in particular any Dr Peterson patients???) comment on this? http://www.fda.gov/Safety/MedWatch/...tyAlertsforHumanMedicalProducts/ucm340094.htm

    I have called up Gilead and they said they could not tell me either IF or WHEN they would have it again. By "if", I meant that I tried to extract some statement from them as to whether they'd resume making vistide in the future, however far off that may be. The fact that they refuse to even state that they would make it again is rather worrying to me as it means they want to preserve the possibility that they would never make it again. Otherwise, why should there be any doubt in their response as to whether they'd supply it again?
    snowathlete likes this.
  14. snowathlete

    snowathlete

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    Sounds like only a specific batch has been recalled? Perhaps the latest lot? In which case you would expect them to just fix the manufacturing problem and resume making it. Must be something else going on.
    August59, justinreilly and merylg like this.
  15. maryb

    maryb iherb code TAK122

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    Thanks for the info ember.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    does drP prescribe valcyte much anymore though? but now leaning towards the visi as is getting better results.
    Are these nk function tests improving purely from visi reducing viral infections?? or is dr P using something else for immune system, i think he is a fan of gamaglobulin?
    merylg likes this.
  17. vli

    vli

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    yes heaps on that cfsalert video that right nowi don't have the link to, we saw that a vis patient of his describing getting gamma...and calling it a "gift". but i have to re-read his findings carefully, because when you're studying the effect of one thing like that surely you can't introduce other things or else how do u know what's doing what??
    August59, merylg and heapsreal like this.
  18. Tristen

    Tristen Senior Member

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    Hiya Heaps,

    My NK function went from 1 before then up to 28 after the Vistide (still low, but improved), but then with follow up maybe like 6 months later off Tx, it was back down to 4. Yet, I didn't relapse the progress made symptomatically, or with other immune parameters (ie, IL 6,8, elastace, TNF, RnaseL, etc, were all absurdly high before Tx, and also remain closer to normal now). Looking at my immune labs, the NK function does not seem connected to symptom severity, at least not immediately. I haven't done another one in over a year now.....prolly do one when I see him next month.

    I didn't get the gamma, or any other tx along with the Vistide, except for IV amino acids (AA), also for that entire year. I felt relief after each AA infusion too. He said I needed the AA's to assist with brain healing.

    No idea how much he uses Valcyte. My impression is that it doesn't work as well as Vistide, at least for CMV which is what I was being treated for. I have remained negative for the HHV6 &7 all along. The CMV was very high.
  19. Omar88

    Omar88 Senior Member

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    http://simmaronresearch.com/2013/04...mecfs-patients-with-hhv6-and-hcmv-infections/
    These results show objective endpoints, subset selection, and recovery. There were complete responders and partial responders among severely ill CFS patients with HHV6 or CMV. These are encouraging results for this subset and further well-designed trials should be pursued to confirm them.” Dr. Dan Peterson
    At the HHV6 Conference in Paris, France today Dr. Peterson reported on the results of a retrospective study following 65 severely ill chronic fatigue syndrome patients given a course of Vistide from 2005-2012 for HHV6 and/or HCMV infections. Despite the interest in pathogens in ME/CFS, antiviral studies are rare and this is the first one reported for this drug.
    August59, merylg, Tristen and 2 others like this.
  20. vli

    vli

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    I can confirm to anyone outside US: no Vistide until further notice.

    I've just spent the last hour reeling from a call I made to my sourcing company that says the six mos' supply they said had for me was in fact non-existent. The recall was 15/2/13, it's now the end of april. I don't expect to be able to get any vistide at all in the near future.

    I cannot put into words the despair I am feeling, as I'd been counting on this for three months while also trying valcyte and doing terrible on it. I was already bedridden at half tabs every three or four days, so it's just dawning on me now that I'll have to go back to being bedbound until God knows whenever vistide again becomes available.
    ukxmrv likes this.

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