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Are there any effective treatments?

Discussion in 'Rituximab' started by Hip, Mar 11, 2018.

  1. Hip

    Hip Senior Member (Voting Rights)

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    Split thread

    Er,... Valcyte, Valtrex, Ampligen, oxymatrine, tenofovir, low-dose naltrexone, GcMAF, Pridgen protocol (for fibromyalgia).
     
    Last edited by a moderator: Mar 11, 2018
    kendonoghue, Inara, Louie41 and 2 others like this.
  2. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    And if you had made this list half a year ago Rituximab would have been on the list. There is absolutely not enough evidence at this moment to conclude that any of these provide an effective treatment of ME/CFS.
     
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  3. Hip

    Hip Senior Member (Voting Rights)

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    True, but that does not imply patients are not benefiting from these treatments.

    Formal evidence is not there because even when promising ME/CFS treatments are developed, nobody bothers to take it further and perform a large-scale clinical trial.

    For example, Martin Lerner's blinded randomized placebo-controlled trial treating 27 Epstein-Barr ME/CFS patients with Valtrex culminated in improvements over placebo at 6 months. That study was published in 2007, but nobody has performed a replication study in the intervening decade.



    Rituximab is still being used as an ME/CFS treatment in Norway by the way; although we know the response rate is low and the risks of serious adverse effects seem significant.
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    Are patients in Norway made aware of the risks before being treated?
     
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  5. Hip

    Hip Senior Member (Voting Rights)

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    I don't know. We know in Whitney Dafoe and Olaf Bodden there was a significant worsening of ME/CFS, so that's one adverse outcome that can occur.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    But is it just speculation as to the apparent cause? Coincidences and all that?
     
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  7. Hip

    Hip Senior Member (Voting Rights)

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    I don't know the exact circumstances, and I think timing of events is important in allocating cause: if these patients were stable for many years in their ME/CFS, and then right after the infusions became severely worse, that would suggest a causal relationship.
     
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  8. Hutan

    Hutan Moderator Staff Member

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    We struck a technical glitch that prevented people posting to this thread when it was located in the 'Treatments' subforum.

    The thread has been moved to the Treatments>Rituximab sub-subforum while we get an appropriate sub-subforum heading arranged.

    Sorry for the inconvenience and confusion.
     
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