The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Questions Answered by Dr. Naviaux

Discussion in 'General ME/CFS News' started by RL_sparky, Sep 13, 2017.

  1. RL_sparky

    RL_sparky Senior Member

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    I saw this on FB in a closed group and have the permission from the board moderator to post this on PR.
    I'm having problems with it formatting correctly here but wanted to post it anyway. I'm including the link at the bottom of this post to the original link for those who might want to view that.

    Update: I was now asked by the FB board moderator to take this down. Dr. Naviaux will be making revisions and once done I or someone else will re-post it again. Sorry!

    Update: Here is the revised copy. I'm fried from today so I'm just posting the link and maybe someone else will post it here. I want to add that it was brought to my attention that Dr. Naviaux's lab is running low on money. He wants it known that he needs financial support for his lab as it WILL SHUTTER if it does not receive funding.

    Please consider donating to Dr. Naviaux's research:

    http://naviauxlab.ucsd.edu/support/

    Revised link: https://lookaside.fbsbx.com/file/Dr. Naviaux Irreverent Group QA.doc?token=AWxe06siUWTNIsk047ZYYKs3PcrYXSe4Ux2BBl_z0PUJCI6uGAMVsXgXQQFOr4RMRcZJGTnJNBN9YtPC39pQBqfAF6QVRBEZOthlVQ9MGVl5HPdJYcHhxYQkLMNBkG6FItCI0g0ZG_pwsaCh0OU0OvVYekCG82_kfJb-fJt50_6RT4ruU_Cnt0q-3Gq8lozYCt-R7GyaG1BH8vU5mkih4-zX
     
    Last edited: Sep 13, 2017
  2. lansbergen

    lansbergen Senior Member

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    Thank you
     
  3. perrier

    perrier Senior Member

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    Thanks very much. Thanks. After reading the responses, the impression I have is that the Suramin will fix the holes in the cells, and thus, all else.

    Someone please help me with the following: on what basis is this founded? The Autism study was tiny.

    Of course, I'm desperate for something for a family member.

    But I'm worried: is this a magic bullet dream?

    Someone more knowledgeable please help out. ( my academic background is not science.)
     
  4. NelliePledge

    NelliePledge plodder

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    this is great information thanks Sparky :thumbsup:
     
  5. Wolfiness

    Wolfiness Activity Level 0

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    How do you create autistic mice?
     
  6. perrier

    perrier Senior Member

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    Did I read correctly that the company that will be making the Suramin will need 2 years? Doesn't this mean the trial won't start until then? I heard the factory that originally made Suramin has closed. Thus, I'm having a bit of difficulty sorting out the planned time line.

    This is all very exciting.
     
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  7. perrier

    perrier Senior Member

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    johnnydme likes this.
  8. Mary

    Mary Senior Member

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    I got the same idea and have the same question - will it take 2 years for the study to even start because of the time required to make the drug?
     
    pattismith likes this.
  9. Mary

    Mary Senior Member

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    RL_sparky and pattismith like this.
  10. melihtas

    melihtas Senior Member

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    Naviaux has been my favorite researcher for a while now. His CDR theory is the only theory that explains all my symptoms in a single mechanism.

    Apparently Suramin is at least seven years away from being commercially available for patients. I cannot wait that long.

    I tried to find Suramin to conduct my own N=1 trial. I contacted pharmacies and doctors all around Africa. Unfortunately Suramin is only available via WHO in every African country except South Africa. In South Africa it is sold via pharmacies but each prescription has to be validated by MCC (Medicine Control Council) and it is only approved for African Sleeping Sickness patients. So, no Bayer's Suramin for us.

    My next step will be trying to buy it from chemical suppliers as a raw material. They are very expensive though. It costs 600-1200 USD per gram. If my budget was not very limited, I would have already tried it.
     
  11. duncan

    duncan Senior Member

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    Create refridgerator mothers for them, if they are in France?
     
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  12. BurnA

    BurnA Senior Member

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    Me too. Logically though this doesn't make much sense. I would have thought if only 10 patients are in the first study then it would make sense to proceed with that before anyone commits to funding more.

    That assumes that they can get enough suramin for the initial pilot trial. If not, then it might explain the wait.
     
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  13. perrier

    perrier Senior Member

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    He said the Suramin is very cheap.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS. There seems to be no clear theoretical model for ME/CFS beyond vague generalisations about the ways diseases work, which I am not sure I particularly agree with.
     
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  15. perrier

    perrier Senior Member

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    This is discouraging, and not many who are severe have this kind of time to wait. I checked on line there seem to be some pharmacies in Kenya selling it. But I wouldn't risk this without medical help. But there must be a way for doctors to get this.

    I hope we aren't all in a dream. Remember how Valcyte was going to be the new Eden.
     
  16. Jesse2233

    Jesse2233 Senior Member

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    What are your thoughts on blocking purinergic signaling in the context of improving mitochondrial function and ATP production?
     
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  17. melihtas

    melihtas Senior Member

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    Haven't you seen his metabolomics studies on ME and Autism patients? Metabolic abnormalities are almost exactly the same and in his Autism trial, Suramin reversed those abnormalities.
     
    Last edited: Sep 13, 2017
  18. perrier

    perrier Senior Member

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    Thanks for your contribution Dr. Edwards.
     
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  19. BurnA

    BurnA Senior Member

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    Just copying sections relevant to timelines to help people figure it out.

    Also:


    Go figure!
     
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  20. hixxy

    hixxy Senior Member

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    Can't really be called a magic bullet when it hasn't even been tried in someone with ME/CFS yet.
     
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