Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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MECFS Alert: Debroah Waroff interviews Dr Nancy Klimas.

Discussion in 'General ME/CFS News' started by Kati, Dec 2, 2016.

  1. Kati

    Kati Patient in training

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    i have not watched it yet but here goes:

     
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  2. BurnA

    BurnA Senior Member

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    It's good. The editing is a bit off, but Klimas is interesting.
     
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  3. RL_sparky

    RL_sparky Senior Member

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    Glad you said that as I thought I was losing it!
     
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  4. Mary

    Mary Senior Member

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    I think it's worth watching - I liked Klimas a lot! She's very articulate and very positive --
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    Dr. Klimas has a gift of using simple language to convey complex stuff. Good video and messed up editing!
     
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  6. alex3619

    alex3619 Senior Member

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    In this interview Nancy Klimas is saying many of the things I would want to hear from good research. This includes issues around subgrouping. Of note they have applied for approval for two drugs to use on ME/CFS GWS, and these are already funded. The drugs were not named. Other drugs are being looked at for their potential, and some may be selected for clinical trial if they can get funding.

    There is a glitch, or was when I played it, where the mold toxin discussion was played twice. It looks like an editing glitch.

    PS The comment for the two drugs is for GWS not ME/CFS, but there are a number of candidate drugs for ME/CFS under early investigation.
     
    Last edited: Dec 2, 2016
  7. Fighttolive

    Fighttolive

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    Alex are you saying they have two treatment potentials they are using?
     
  8. lnester7

    lnester7 Seven

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    I understood that was for GwS not CfS
     
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  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Tell me about your profile picture- it does not compute.
     
  10. alex3619

    alex3619 Senior Member

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    No, they have two treatment potentials they have studies planned for and funded, awaiting approval. There are more candidate drugs being investigated.

    PS The two drugs are for GWS as commented on by @Never Give Up. However there are candidate drugs under testing with more funding for ME/CFS. Only the drugs that are successful in these early studies will go on to human trials for ME/CFS. Some of the studies underway are for cell studies, they are studying what these drugs do in cells, possibly donated ME/CFS cells though this is not clear.
     
    Last edited: Dec 2, 2016
  11. alex3619

    alex3619 Senior Member

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    Klimas is planning a Rituximab study for GWS but its not funded yet.
    I just rewatched the video. This appears to be correct, the two drugs are for GWS not CFS. Some of the comments on potential drugs are for CFS though.
     
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  12. shannah

    shannah Senior Member

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  13. aaron_c

    aaron_c Senior Member

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    In the video Dr. Klimas suggests that she thinks that the best way to figure out who will respond to Rituximab is to see who has an cytokine signature that indicates autoimmunity. (She submitted a proposal to study this, so admittedly it is just a theory right now.) Does anyone know if this test is available already, perhaps for other autoimmune diseases?
     
  14. Kati

    Kati Patient in training

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    Dr David Patrick made a presentation at IACFSME in regards to blood predictors of response to Rituximab. At the moment, nothing is published, therefore it is highly unlikely that any information is going to be shared around.
     
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  15. Nielk

    Nielk

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    It sounds to me like these are existing drugs? If so, why did they have to do animal testing first for the drugs for GWI and why the need to test cells first for ME?
     
  16. BurnA

    BurnA Senior Member

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    My understanding is they developed an animal model for GWI. They then tested the drugs on animals to see which ones worked best.
    They don't have an animal model for ME, hence testing on cells.
     
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  17. alex3619

    alex3619 Senior Member

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    You cannot get funding without evidence. For Rituximab they had three responders from Lymphoma treatment. For CFS and GWS, zero evidence for these drugs. So you need evidence to get funding for a pilot study, which gives you evidence for a phase 2 study, which gives you evidence for a phase 3 study. Otherwise there is no funding and nothing happens.
     
  18. Hilary

    Hilary Senior Member

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    Good interview - what struck me is her emphasis on really tightening the entry criteria - I think she said something like 'it doesn't serve anyone to just slop everyone in the same big bucket..if you want to succeed, you have to tighten the entry criteria' (I paraphrase as can't recall her exact words). What a marked contrast to the BPS trials in the UK where they not only slop all potential ME subgroups in the same bucket, but everyone else with chronic fatigue of any description as well......
     
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