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Naviaux to Speak on CDC Conference Call May 25

Discussion in 'General ME/CFS News' started by Gemini, May 6, 2017.

  1. Gemini

    Gemini Senior Member

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    CDC announces Conference Call with Dr. Naviaux speaking on "Metabolic Features of MECFS":

    May 25, 2017

    3:00 pm - 4:00 pm EDT

    NEW CALL NAME


    The CDC CFS Patient-centered outreach and communication activity (PCOCA) has been changed to

    CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder Engagement and Communication (MECFS-SEC)

    Call number: 1-800-988-9482
    Participant Code: 3242630


    Meeting Agenda

    3:00pm Welcome and Telephone Overview

    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention

    3:15pm “Metabolic Features of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”

    Robert K. Naviaux, MD, PhD
    Professor of Genetics
    Biochemical Genetics and Metabolism
    Departments of Medicine, Pediatrics, and Pathology
    Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)
    University of California, San Diego (UCSD) School of Medicine

    3:45pm Questions from MECFSSEC@cdc.gov Mailbox for Guest Speaker and CDC
     
  2. A.B.

    A.B. Senior Member

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    @joshualevy you had a question about Naviaux' metabolomics study right?
     
  3. dancer

    dancer Senior Member

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    Bumping this, in case folks miss it under the calendar of events. I hope to listen in. My doc has been interested in Naviaux's research.
     
  4. Never Give Up

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

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  5. Never Give Up

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

    Messages:
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    Notjustfatigue, merylg and TiredSam like this.
  6. voner

    voner Senior Member

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    Last edited: May 24, 2017
  7. joshualevy

    joshualevy Senior Member

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    I had several groups of questions:

    First had to do with p-values:
    What level of p-value was considered significant?
    How many metabolites were measured and how many were significant?

    Second had to do with drug use:
    What percentage of the patients were recruited from Dr. Gordon's practice as compared with elsewhere?
    (If all or almost all of the patients came from Dr Gordon's practice, then don't bother with this question: ) Did you compare patients from Dr. Gordon's practice with those from elsewhere, and were there any differences?
    Were patients who used opioids excluded from the study?
    If not, was opioid use measured (or queried)?
    If so, was opioid use correlated with any of the metabolites which were measured?

    Third:
    Where and how are patients for the second trial being recruited, and how is this different or similar to where and how patients were recruited for the first trial?

    If it has not already come up, I would ask when they hoped to publish their follow-on results.

    Fourth (and this one is completely optional, really tense, but maybe the most interesting):
    Do you think it is a conflict of interest for someone to edit a scientific paper, which was written by a doctor who is actively treating a close relative of the editor at the same time the paper was written and edited?

    (If I were going to do it, I would ask that last question, if possible, after the talk had been given, when the speaker is just hanging out answering questions from individuals. It's a reference to the correction that PNAS published to his paper. It will not make you any friends, but it is an interesting moral question.)
     
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  8. slysaint

    slysaint Senior Member

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    would have thought he would have got the name right tho':(
    "
    Myalgic
    Encephalitis"

    eta: suramin trials? Just looking up this drug and it's current uses.
     
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  9. Nielk

    Nielk

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    https://www.drugs.com/cons/suramin-injection.html


     
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  10. dancer

    dancer Senior Member

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    I think the slides referred to "low dose suramin" so perhaps it's repurposing it's use in lower than normal (and not as toxic) dosage. I am confused/curious to hear about his theories for how this drug could address ME/CFS. The slides mention 50% of people live with chronic illness...but I'm not sure lumping how ALL chronic illnesses work is necessarily helpful. I'm not sure people get locked into heart failure, diabetes, arthritis, Lupus, MS, etc., through the same mechanism. But much of this is way over my head. I'm remaining ... curious at this point.
     
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  11. Demepivo

    Demepivo Dolores Abernathy

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    Ok, some additional info for you...

    Dr N is talking to Bayer the manufacturer of Suramin to do trial with 10 female patients. He is looking to raise money for the trial (see slides near the end)
     
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  12. Demepivo

    Demepivo Dolores Abernathy

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  13. dancer

    dancer Senior Member

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    The call is starting. The host is saying that transcripts will be available at a later date on the CDC website.
     
    MEMum, mango and Notjustfatigue like this.
  14. Never Give Up

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

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    About to start.
     
    Notjustfatigue and Aroa like this.
  15. dancer

    dancer Senior Member

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    Dr. Unger is saying that their guest speakers represent their own views and not that of CDC.
     
  16. dancer

    dancer Senior Member

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    Right now Dr. Unger is giving a report on what the CDC has been up to. Sounds like updates to their website will be happening by mid-summer. She's also reporting on their multi-site studies.
     
  17. jimells

    jimells Senior Member

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    So far it has taken them SIX YEARS to produce one graph that confirms what we already know: that ME is a physiologic illness not a mental illness.

    Maybe in another decade they will have confirmed the work that Naviaux, Davis, Fluge & Mella, etc. have recently completed.
     
    Jan, Valentijn, Solstice and 16 others like this.
  18. shannah

    shannah Senior Member

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    These people (CDC) are so discouraging.
     
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  19. dancer

    dancer Senior Member

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    Dr. Naviaux's talk is jam-packed with info and interesting theories.
     
    Valentijn, Solstice, merylg and 9 others like this.
  20. bspg

    bspg Plant Queen

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    Wow. That presentation was amazing! It makes so much sense.

    Does anyone have the desire/ability to write up a synopsis for the forums? I would volunteer but I was late to the call and didn't get all the info. I'm happy to help anyone who is interested.
     
    Last edited: May 25, 2017

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