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Valganciclovir research paper - Jose Montoya & Andreas Kogelnik

Discussion in 'Latest ME/CFS Research' started by Bob, Aug 21, 2013.

  1. Sasha

    Sasha Fine, thank you

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    My impression from reading the studies of the clinicians' records is that for many people, the improvement maintains in the long term. It's a while since I've read the studies so my memory of that could be wrong. As with so many things with ME, I wonder if there's a range of responses from zero to temporary to almost permanent.
  2. Sparrowhawk

    Sparrowhawk Senior Member

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    This is disappointing to see but thanks for the link.

    This doesn't seem to square at all though with what Dr. Kogelnik told me two months ago his experience was with Valcyte which was that 30% approx of his patients got much better (though no indication of how long they held that effect); about a third of his patients saw some benefit, and it may not have lasted. And a third could have been taking nothing. Eg noresponse. I've been going along considering Valcyte because of that 30% shot, now I'm not sure it's worth three potential toxicity. SOC I know it worked for you and your daughter and that's part of what made me continue to consider this option.
    Bob, Firestormm and Sasha like this.
  3. SOC

    SOC Moderator and Senior Member

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    I think Dr Lerner believes that longer treatment is needed to get at deep tissue infection, so if you stop too soon, the remaining areas of active infection just keep spreading and you start to feel sick again.
    Sparrowhawk likes this.
  4. SOC

    SOC Moderator and Senior Member

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    I seems likely to me that those who respond to Valcyte are a subset of PWME. The fact that 3 people in my extended family responded well (2 fully functional, 1 greatly improved) to Valcyte suggests that we have something in common -- genetics, the same virus, who knows? We were at 3 different levels of illness -- one mild, one moderate, and one severe. We had a range of HHV-6 titres from barely high to very high, so that doesn't seem to be common factor. Daughter and I have different immune abnormalities -- she has low NK cell number and function, I have high NK cell function but low CD8+ cell count -- so that is not the commonality.

    It seems likely at this point that ME/CFS will turn out to be multiple illnesses classed under one heading. Perhaps one of those groups responds to Valcyte. If Dr Kogelnik's numbers are right, two thirds (67%) of his patients have a positive response, which sounds like a big subgroup, but it's not all of us.

    I'm one who didn't achieve full functionality with Valcyte. I'd take it again for the same amount of improvement.
    WillowJ likes this.
  5. Legendrew

    Legendrew Content team

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    I'm not sure I agree with this considering that many of the viruses implicated infect neurones.

    The improvement rate Dr Kogelinik discusses is likely inflated through the exclusionary testing which he likely does meaning those he treats have already been divided into a subgroup who are more likely to respond. I think the results from his recent trial likely reflect the more likely outcome in the general ME population IE a smaller subset benefit. It's definitely worth further work though - i'm very intrigued to see the results for his multi-arm approach to a rituximab trial get underway - especially how the rituximab in conjunction with valcyte fares compared to rituximab alone.
    Sasha and SOC like this.
  6. Sasha

    Sasha Fine, thank you

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    What exclusionary testing does he do?
    Firestormm likes this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Proper sub grouping improves the risk to benefit ratio and will improve the overall success rate of the treatment. In the future these treatments would more likey be approved as a treatment for cfs me if they can predict more accurately who will respond. For us in Australia could mean that the cost of a drug like valcyte would be covered by the health system here. Also maybe better treatments will be found.

    Cheers
  8. Legendrew

    Legendrew Content team

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    I can't say for certain but i'm sure I remember reading somewhere that he does tests for viral antibody titres - surely if these are lower it would be unlikely that you would respond to antiviral therapy (presuming that the antiviral action is what makes people feel better of course.)
  9. Sasha

    Sasha Fine, thank you

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    I've read in his earlier paper that he treats according to high IgG titres but having read all the ME Valcyte papers, I can't see much relationship, if any, between initial titres above their threshold and response to treatment. Also, high IgG titres aren't generally accepted as evidence of current (as opposed to past) infection. This is making me wonder if Valcyte is operating via a different mechanism and if they haven't really identified a subset at all - maybe a random sample of PWME would do just as well (or badly). Or maybe high IgG's to individual viruses are an indirect measure of general immune function.

    It's a bit of a mess. :cry:
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    testing is a mess but i think if the doc can put a few tests together then it could hint at an active infection. I think if one has borderline viral titres, t cell markers and has low nk function then theres a good chance that those viruses are causing issues. The only real way to know is to try and treat the infections and see if improvement occurrs.
    Im not sure if viral titres are an indication of severity either and then when one is on antiviral treatment, titre levels can be even more confusing as some can start to feel better but tests show titres going up. I think all this shows they need better viral testing??
    SOC, Sparrowhawk and Sasha like this.
  11. Sparrowhawk

    Sparrowhawk Senior Member

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    Dr. K. did pages of initial tests on me, including viral antibodies, immune function indicators, cell counts, and nk cell function test. Given those results he then wanted to do viral blood levels for my big three (hhv6, CMV, ebv), and he said if any of them were high then I should consider antivirals asap. They all turned out to be below detectable levels so he said I could do what, at the time, was my preference: waiting to see if I could get better with rest and nutrition/supplementation. Basically Montoya looked at all the tests Dr. K. had done and checked all the boxes -- said he couldn't think of anything else that would make sense to test (not surprising because they essentially are coming out of the same root approach) and they both said "see you again in six months."
    Sasha likes this.
  12. Sparrowhawk

    Sparrowhawk Senior Member

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    Yes that last is my impression, of course Valcyte hasn't been in use long enough to track lifelong "permanent" but if you consider 5 years healthy as a standard, that may be true for some subset of those who tried it.
    heapsreal and Sasha like this.
  13. Sparrowhawk

    Sparrowhawk Senior Member

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    Circling back to this thread after having found and read the great interview here:
    http://thoughtsaboutme.com/2011/04/...ting-chronic-fatigue-syndrome-and-immunology/

    I am just not getting the contrast between the paper that started this thread, and his comments below. Am I missing something? The papers basically "meh" about the effects of Valcyte. Yet below, and when I spoke with him a few months ago, he seemed to be saying 30% or better efficacy. Confused here.

  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    So its either going to work or its not. I guess it comes down to a good diagnosis then or luck. If we look at dr lerners work, thise with hhv6 etc that dont respond he says have an underlying bacterial infection, so those non responders may need their doc to investigate deeper.

    The other question is how long does one stay on valcyte before their immune system recovers, well for me its now over 12 months and im sure many others. We need a good drug to get our immune system going as well to use along side valcyte.

    Good news valcyte is going generic, anyone know when that is??

    cheers!!!
  15. Sparrowhawk

    Sparrowhawk Senior Member

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