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Open Medicine Foundation bags Dr Naviaux

Discussion in 'General ME/CFS News' started by Sasha, Feb 10, 2016.

  1. Sasha

    Sasha Fine, thank you

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    They seem to be getting a lot of good people! Just had this in an email:

     
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  2. Sidereal

    Sidereal Senior Member

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    I read a few of his papers a couple of years back and was impressed.
     
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  3. Kati

    Kati Patient in training

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    Thank you so much OMI and OMf and welcome to Dr Naviaux! :balloons::balloons::balloons:
    :nerd::nerd::nerd:
     
  4. akrasia

    akrasia Senior Member

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    Last June someone on facebook was helping patients find healthy controls for a study she was participating in


    SHARE THIS as widely as possible as the list below is likely to grow and we'll need controls from all over the US. You can volunteer even if you don't match someone below - we may still need you as the list is incomplete.
    Based on data already obtained from two other sites, this will be a ground breaking study published by years end. My specialist has seen the early data and says it is "truly spectacular and will change the face of CFS treatment".
    He has recruited approx 60 patients, and many of them are having difficulty finding healthy controls of the same gender, within 5 years of their age, and within a 200 mile radius geographically.
    "Healthy" is defined as someone who can work full time (if age appropriate), does not have Type II Diabetes, COPD or active cancer, and does not live with someone with CFS. This is a FREE study and involves just one blood draw. Phlebotomists will go to the control's home or workplace, whichever is preferred. Healthy controls will get all the data that patients do (A LOT), but without interpretation UNLESS it's something that points to a well known, treatable problem that a local doctor could manage.

    and

    ... right now the researcher in CA (Dr. Naviaux) has already done 40 patients and controls from two different clinics in CA. At this point the CFS patients HAVE to be patients of my doctor, Paul Cheney in NC. But since his patients come from all over the US and world, we are looking for controls from all over the US.

    and

    http://www.gordonmedical.com/unrave...ego-the-effort-to-conquer-autism-is-personal/

    If you scroll down there is a short paragraph on Gordon Medical's involvement with the CFS project.

    So, caveat lector, I have no personal knowledge of this, but it is interesting and suggests the research is ongoing...


     
  5. Daisymay

    Daisymay Senior Member

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    Thanks Akrasia for posting this info, it sounds really interesting, looking forward to seeing it published.
     
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  6. Sasha

    Sasha Fine, thank you

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    That'd be handy! :)
     
    Susanna D, Daisymay and Never Give Up like this.
  7. shannah

    shannah Senior Member

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    Would love some inside tidbits ...
     
  8. natasa778

    natasa778 Senior Member

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    I'm putting my money on suramin ;-)
     
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  9. Never Give Up

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

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    I've had some correspondence with Dr. Naviaux, here's what he told me:

    "I have only been working in the CFS world for a year, but we have already made several discoveries that have a chance to offer real hope for people who have suffered for so long. We have a paper in review at JAMA. If it is published, we will have a real start on seeing CFS in a new light, and having real tools for new ways to treat patients as individuals, and not just as a patient with CFS."

    Very encouraging!
     
    Susanna D, rebar, TiredSam and 22 others like this.
  10. Kati

    Kati Patient in training

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    Thank you @Never Give Up this is fantastic news!
     
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  11. Never Give Up

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

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    nandixon likes this.
  12. halcyon

    halcyon Senior Member

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    It's an interesting read that I think will have relevance to our disease as more is learned. So far I'm happy to see that Dr. Naviaux is involved in research on this disease and I'm looking forward to his JAMA paper.
     
    Susanna D, nandixon and Never Give Up like this.
  13. Sasha

    Sasha Fine, thank you

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    Thanks for writing to him - that is indeed very encouraging!

    I wonder how long it takes JAMA to get things through review and into print.
     
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  14. Sidereal

    Sidereal Senior Member

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    Wow! JAMA tends not to publish any biomedical CFS papers.
     
  15. Kati

    Kati Patient in training

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    It depends on peer review and whether corrections are required. And they are still hoping to be accepted at this stage.
     
  16. Sasha

    Sasha Fine, thank you

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    Some journals give standard estimates of how long it should take authors to get a decision - I don't know if JAMA does that.

    Can't wait to see this - hope it gets through quickly!
     
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  17. Tuha

    Tuha Senior Member

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    Do we know what was the study about? I am always terribly impatient :)
     
  18. Sasha

    Sasha Fine, thank you

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    Excellent question! I don't know. Maybe there's a clue here:

    http://med.ucsd.edu/divisions/med-genetics/research/Pages/Naviaux-Lab.aspx

    There's this from Mindy Kitei's interview with Ian Lipkin:

    More on the autism thing - but I suspect that's not an example of what he's doing in our field.

    So, mitochondria? Dunno.

    @Simon, do you know anything?
     
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  19. Sasha

    Sasha Fine, thank you

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    I just searched on the NIH's project database for him and it didn't produce anything. Was hoping I could find his grant application but his work must have been funded otherwise. :cool:

    Very curious now!
     
    Bob likes this.
  20. Sasha

    Sasha Fine, thank you

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    Still googling (obsessed now!). A little snippet from CFS Patient Advocate from July 2014:

    I don't understand the reference to "playing dead"...
     
    waiting, merylg, cigana and 1 other person like this.

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