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Details on NIH study

Discussion in 'Active Clinical Studies' started by viggster, Feb 16, 2016.

  1. viggster

    viggster Senior Member

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    At the just-completed CDC Grand Rounds, Dr. Avindra Nath of NINDS spoke fairly quickly and he presented a lot of details. I didn't take good notes, so others should fill in.

    - NIH will do a 3 phase study, starting with observation (the first study w/ 40+ patients) through treatment
    - Immune profiling, microbiome, autoantibodies a few things studied
    - Testing will be done pre- and post-exercise
    - 1500 cytokines/analytes will be examined in immune cells
    - NIH will make stem cells + neurons + humanized mice with ME patient cells - they are making a mouse model of the illness
    - Patient Advisory Committee will help guide the studies
    - 25 + people at NIH working on the study
    - Drs. Unger + Lipkin are senior advisers

    Lots more details went by too quickly for me to type out.
     
    Last edited: Feb 16, 2016
  2. shannah

    shannah Senior Member

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    I think I understand that criteria is to be Fukuda and CCC but would like this confirmed.
     
  3. viggster

    viggster Senior Member

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    He did mention those two criteria.
     
  4. Never Give Up

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

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    I'm pretty sure he said 2500 proteomes/proteins.
     
  5. A.B.

    A.B. Senior Member

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    Paraphrasing:

    The hypothesis is that a viral infection triggers immune mediated brain dysfunction.

    They are approaching the problem from an immunological angle.

    The samples obtained from patients will be stored, ready to be used in other projects, including projects from outside the NIH.

    The planned tests sounded extremely detailed (possibly the most detailed study ever done on ME/CFS?). They really are serious.
     
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  6. Valentijn

    Valentijn Senior Member

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    Investigators:
    investigators.jpg

    The lead clinical investigator, Dr Brian Walitt, might be the problem. I've only looked at two of his papers so far, but one is saying FM brain fog is entirely subjective (based a single test in a very small group), and another seems to be going the central sensitization route (your brain just thinks you're fatigued) for GWS/CFS.
     
  7. Kati

    Kati Patient in training

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    Here are the screen shots:

    image.jpg image.jpg image.jpg image.jpg image.jpg image.jpg
     
  8. viggster

    viggster Senior Member

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    If anyone looks at that plan and decides NIH is not serious about this, they need to take a few steps back from the screen. This is a very extensive, detailed study. The 40 inpatients will deserve come kind of recognition + maybe a stuffed animal from the fair. They are going to be put through the wringer (but all for a good cause).
     
    Last edited: Feb 16, 2016
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  9. Never Give Up

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

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  10. duncan

    duncan Senior Member

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    Maybe I missed it, but did anyone discuss the logic behind the control groups selected?
     
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  11. duncan

    duncan Senior Member

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    Who is Joseph Snow? He is listed under Associate Investigators.
     
  12. Sasha

    Sasha Fine, thank you

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    No - I was listening for it, but no.
     
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  13. Never Give Up

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

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    No.
     
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  14. viggster

    viggster Senior Member

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    Well if he thinks that now, he certainly won't after all million + test results come back from the inpatients.
     
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  15. Forbin

    Forbin Senior Member

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    Dr. Nath:

    "So, I think what we're going to do is - we're going to collect a lot of lymphocytes both from blood and from CSF (cerebrospinal fluid). Initially, we'll be storing them and what we'll be doing is looking at cell-free fluid in the CSF and the serum for not just a small number of cytokines - actually 1500 lysates... analytes. But we want to be very, very comprehensive, and I've developed a proteomics assay in my own lab which will look at about at least 2500 proteins.

    "So when we look at that composite, I think it will be very clear to us what cell types may be dysfunctional in these patients and how we can subgroup those individuals. And that will then allow us to go back and now say, "Well this looks like an NK cell function, let's look at it... or this looks like a B cell function," because there's (in)numerable amounts and very time-consuming, tedious assays for each cell type that you could potentially do, or interactions between cell types.

    "So, instead of doing that at the get-go on everything you could possibly think (of), I think that's a good screening tool, and then we can focus on the real aspects that we think are really dysfunctional."
     
    Last edited: Feb 16, 2016
  16. Sasha

    Sasha Fine, thank you

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    Such an odd mix. I agree that there's a seriousness of purpose there, but also a deep weirdness with the FMD control group. I hope Dr Nath will respond more fully about that control group in days to come, and I'm pleased that there will be a Patients Advisory Group. I'm hopeful that that control group will come out in the wash and that by working with the NIH, we can make this a study that everyone can get behind without reservation.

    As ever, we need our eyes on the prize. This study looks 80% of the way there to me, and something to build on.
     
  17. Valentijn

    Valentijn Senior Member

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    Have you read the prior papers from the lead clinical investigator? Because I'm up to three for three looking pretty bad. The 3rd one is musing on the evolution of the symptoms of fibromyalgia, and it's similarities to neurasthenia, with the attraction of being a "real illness" ...

    I think we've found the American version of Simon Wessely.
     
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  18. Never Give Up

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

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    Did you record it? How? Thank you for the transcript!
     
  19. viggster

    viggster Senior Member

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    How can anyone look at these details and think of Simon Wessely? This is going to be the deepest biological investigation of ME ever conducted.
     
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  20. duncan

    duncan Senior Member

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    Joseph Snow may also be worthy of a closer look.
     

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