Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

Discussion in 'General ME/CFS News' started by Sasha, Mar 11, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Jennifer J, BurnA, Simon and 12 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Registration now open:

    https://attendee.gotowebinar.com/re...al&utm_source=twitter.com&utm_campaign=buffer

     
    Mel9, Mary, waiting and 2 others like this.
  3. geraldt52

    geraldt52 Senior Member

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    "...His research focuses on understanding the pathophysiology of retroviral infections of the nervous system..."

    Coincidence?
     
    RL_sparky likes this.
  4. Kati

    Kati Patient in training

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    This webinar is tomorrow, there is still time to register and think about questions for Dr Nath.

    Should you prefer to watch at a later date, these presentations are usually recorded.
     
    Last edited: Apr 20, 2016
    Valentijn, waiting, Bob and 1 other person like this.
  5. viggster

    viggster Senior Member

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    Not sure what you mean. Nath was chosen to lead the intramural study because he's researched neurological effects of HIV & other viruses. He's also done some work looking at possible endogenous retroviruses in ALS & other neurological disorders.
     
    Mel9, Liz_999, Sushi and 1 other person like this.
  6. geraldt52

    geraldt52 Senior Member

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    While I accept the fact that mistakes were made in the WPI debacle, I'm still not convinced that CFS is not, or is not in part, a "retroviral infection of the nervous system". I'm troubled with things Judy Mikovits has done and said, but I have trouble dismissing Frank and Sandra Ruscetti. I was just wondering aloud, given his prior work, if there is any deeper meaning that can be gleaned from Nath's selection as the lead for the NIH investigation...
     
    ukxmrv likes this.
  7. Yogi

    Yogi Senior Member

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    I could not find this on the upcoming events. I assume it starts now 5pm GMT?
     
  8. Sasha

    Sasha Fine, thank you

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    6pm BST (in 40 minutes).
     
  9. Yogi

    Yogi Senior Member

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    Thanks Sasha. Some websites when searching for 'GMT to EST' are stating 5pm and others I now see state 6pm.

    BST is one hour ahead of GMT. Ahh I see I should have searched for BST.

    DOH ...silly me!!
     
  10. viggster

    viggster Senior Member

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    Well, science is a team sport. If the Ruscettis think they have a new virus, they need to deposit the sequence in GenBank and publish their findings. In absence of public information, the sounds coming out of their mouths can't be evaluated and are pretty close to meaningless.
     
    BurnA likes this.
  11. Kati

    Kati Patient in training

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    Interesting that Dr Nath choose the name myalgic encephalomyelopathy.

    But then later on he says myalgic encephalomyelitis.
     
    mango, Esther12, Comet and 3 others like this.
  12. Kati

    Kati Patient in training

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    Recognition is a very good thing.
     
    actup, mango, Esther12 and 2 others like this.
  13. Kati

    Kati Patient in training

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    He said he wasn't expecting to be asked to lead a study for ME. Says he has seen patients with ME over the years.
     
    actup, Hutan, mango and 3 others like this.
  14. Kati

    Kati Patient in training

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  15. Kati

    Kati Patient in training

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    Metabolic chamber: patients will spend the night there-great technology to measure metabolites.
     
    MeSci, mango, Esther12 and 1 other person like this.
  16. Kati

    Kati Patient in training

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  17. Kati

    Kati Patient in training

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  18. Kati

    Kati Patient in training

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    He is not worried about heterogeneity.

    Re post Lyme: he says they have a good cohort at NIH. I interpret it as a cohort of convenience.
     
    MeSci, mango, Esther12 and 1 other person like this.
  19. Kati

    Kati Patient in training

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    Nath comes from a virology background, interested both in immunology and neurology. Current work is zika virus.

    Goal is not to become ME expert, goal is to find something.

    Study design: any study design is a process in evolution. Things will change as they see necessary (Ex adding another control group)

    'We have worldclass expertise' 'we cannot do large studies at NIH, limited beds'

    Team member of the study: NIH peeps do not want their name mentioned, others didn't want to be involved at all. Talk about community being antagonistic.

    Timeline of study: when you remove control group, got to go to scientific review, go to IRB again. By summer, start enrolling.
     
    MeSci, Justin30, mango and 4 others like this.
  20. Kati

    Kati Patient in training

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    Question and answers:

    Would you agree that scientists/dr who pick pts have capacity of bias?
    - we will not eliminate everybody's biases. So you design the study so the biases will become irrelevant.
    - depressed patient would stand out in the crowd.
    - Wrong pt population study would be more important in treatment trials.

    Some on NIH study have opinion on somatization...
    - my role is I am interested in immunology and that is the research question is what I am interested in. He is designing the study so psych bias will not be important.

    will the pts do a 2 days CPET following Stevens protocol?
    - he is interested in immunology.
    His goal is to study 'fatigued patients' (his expression) exercise them, study immune profile before and after.
    He has been asked 'have you talked to this person or that person' he will be talking to a few who claim expertise in the field for a one day seminar

    have you spoken to Fluge and Mella?
    - i read their study but I can't talk to everyone that publishhes a paper, it doesn't make much sense

    Do you have plans to study adrenergic and muscarinic antibodies?
    -He has a unique way to look for auto-antibodies to the brain. I am certain we will find autoantibodies to the brain if there are to be find

    They are planning to do spinal tabs on 2different occasions, before and after exercise.

    Pts will be in hospital for a week. Study will last 2 years.

    Pt participation: will the study include pt representative ?
    -he is eager to do that however if can get complicated. Feedback is important and he agrees with that but mechanism can get difficult
     
    MeSci, Snow Leopard, mango and 5 others like this.

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