Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Nancy Klimas webinar hosted by PANDORA

Discussion in 'General ME/CFS News' started by Bob, Feb 25, 2015.

  1. Bob

    Bob

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    Fascinating webinar by Nancy Klimas. Her research program is huge, extensive and dynamic. She's got much more going on than I knew about, with a huge team behind her, and a number of big-name research collaborators.

    Recorded 24th Feb 2015

    www.youtube.com/watch?v=ldu843XAAHw

     
    Last edited: Mar 7, 2015
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  2. Bob

    Bob

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    Asked to name a single treatment of choice, Klimas named Imunovir; an immune modulator. For details, watch video at 1.00.00 & 1.11.15.

    Some info re Imunovir:
    http://phoenixrising.me/treating-cf...ndrome-isoprinosine-immunovir-by-cort-johnson

    I think this is the Canadian imunovir pilot research study that she refers to:
    Clinical Improvement in Chronic Fatigue Syndrome Is Associated with Enhanced Natural Killer Cell-Mediated Cytotoxicity: The Results of a Pilot Study with Isoprinosine
    Francisco Diaz-Mitoma, Eva Turgonyi, Ashok Kumar, Wilfred Lim, Louise Larocque, and Byron M. Hyde
    2003
    http://informahealthcare.com/doi/abs/10.1300/j092v11n02_06
     
    Last edited: Feb 25, 2015
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  3. helperofearth123

    helperofearth123 Senior Member

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    Interesting and encouraging, thanks!
     
    Last edited: Feb 25, 2015
  4. Wally

    Wally Senior Member

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    @Bob,
    I agree the webinar was really interesting and I would recommend it as worthwhile for others to watch/listen to.

    Thank you to PandoraOrg and Dr. Klimas for putting this together to give patients an opportunity to keep updated on what ME/CFS Physicians and Researchers are working on, as well as explaining the obstacles they face in trying to solve this illness and develop effective treatments.
     
    Last edited: Feb 25, 2015
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  5. Zinna

    Zinna

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    Her work certainly is fascinating and much more extensive than I realized. It's good to see all the PI's collaborating.
     
    Last edited: Feb 25, 2015
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  6. Bessie

    Bessie

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    It certainly does give hope.
     
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  7. SDSue

    SDSue Southeast

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    One thing really struck me:

    FIVE YEARS!!!! Five years ago Klimas had data showing which cytokine (IL-1) to work on, and she can't get funding to move forward. Can't get funding to move forward testing already approved meds! FIVE YEARS!!!!! Imagine what you could do with 5 years of actual life - working, exercising, reading, even just leaving the home or bed.

    Is it just me?
     
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  8. Bob

    Bob

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  9. Mij

    Mij Senior Member

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    @Bob the virologist who rx'd Immunovir to me in that pilot study you linked told me (when I asked him) that it made his patients "less tired". That was it. When I had a complete relapse from it, he didn't have an answer.
     
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  10. Bob

    Bob

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    Yes, from reading some of the literature and forum posts today, my interpretation is that imunovir has a mild effect on some symptoms, and it probably isn't a long lasting effect after stopping the drug. In the very small studies that have been carried out, a significant proportion of patients report finding it helpful, but it doesn't seem to be highly effective. It might be somewhat helpful for some symptoms in a proportion of patients.
     
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  11. halcyon

    halcyon Senior Member

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    It's a bit more complex than just TH1/TH2 balance. There is evidence that inosine, through ADAR, can cause A-to-I editing in RNA viruses, such as enteroviruses. This process leads to a detrimental modification of the viral RNA structure, as well as makes the RNA more readily detectable by intracellular pattern recognition receptors, such as TLRs. Dr. Chia has been recommending use of inosine for this effect for some time now, but it appears to only work well in combination with other antivirals such as Epivir and Equilibrant.
     
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  12. alex3619

    alex3619 Senior Member

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    There is another thread on this where I made comments recently.
     
  13. Sasha

    Sasha Fine, thank you

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    More grist for your mill, @Jonathan Edwards?

    Just watching this now and it's fascinating - really wish we had this kind of thing going on in the UK.

    Edit: Rituximab gets a mention in a interesting context at around 1:04 - beyond me to summarise!
     
    Last edited: Feb 26, 2015
  14. JamBob

    JamBob Senior Member

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    How do people see autoimmunity fitting into Dr Klimas's approach? It seems from the video that her research team are working a lot on homeostasis and how to tweak any homeostatic imbalances - but surely if autoimmunity is the problem, then the autoimmune attack is the primary area they should be targeting rather than the downstream effects? Or am I reading this completely wrong?
     
  15. Bob

    Bob

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    Rituximab doesn't work for everyone, and we don't yet know what proportion of patients will benefit from it in the phase III trial. Also, even if Rituximab proves to be highly effectively in a proportion of patients, they haven't identified any auto-antibodies in ME patients yet (as far as I'm aware), so there's a chance that Rituximab works on ME patients for reasons other than reducing an auto-immune response. Rituximab could potentially have an immune-modulating effect that has nothing to do with auto-antibodies. That's my interpretation anyway. So, for all these reasons, it seems sensible to pursue a variety of research programs and a variety of potential treatments.
     
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  16. Bob

    Bob

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    Interesting that Nancy Klimas is doing some stem cell research. I'm still blown away by her research program. I might try to write some notes on it over the next few days.
     
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  17. alex3619

    alex3619 Senior Member

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    I think they have, but not consistently, and so far as has been announced so far, not correlating with improvement from Rituximab.

    A systems approach is what I would do if I could get involved in research as a scientist. Even if an autoantibody attack is the cause, and it might be, then this approach may well identify key targets the antibodies are attacking. This would enable highly specific tests to be run to see if these targets are being attacked, with the potential to finally isolate the autoantibody.

    If an autoantibody attack is not the cause, which seems more plausible, then its highly likely that its an autoinflammatory response. This might also respond to Rituximab. Such a response could be identified with a systems approach.

    One serious caveat I have with such an approach though is it is highly dependent on which tissues are being examined. There are no brain biopsies for example, and if the brain chemistry turns out to be necessary to solve the puzzle then this would be missed. To be clear, I am definitely not recommending brain biopsies, and you wont see me in a line for one.
     
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  18. SOC

    SOC Senior Member

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    Please do! :thumbsup: I always appreciate the clarity you bring in summaries of documents and videos I have difficulty reading. I used up about 6 months worth of cognitive effort reading the IOM report, so I'm stuck with intelligent patient summaries for anything else that comes up in the near future.
     
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  19. SDSue

    SDSue Southeast

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    She states that she has patients who've undergone stem cell treatment and are doing great. Where did these patients go? Out of country? Seems this was a big topic in about 2010 and then died out?
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    But this sort of biopsy can be done post-mortem and yield useful info?
     
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