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An Update on ME/CFS Research with Ronald W. Davis, PhD

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Feb 21, 2017.

  1. Kati

    Kati Patient in training

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    A POTS diagnosis is defined as an increase in heart rate of 30 beats per minute when moving from the recline position to upright. This is regardless whether there are other co-morbidities.
     
  2. lnester7

    lnester7 Seven

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    The question is: do we have the protein defect per the study? Or our protein is ok and our issue is just lack of blood flow to brain. This will be important because if we have the protein issue on top of what is going on with cfs, we need to treat both. Or if protein is ok, when we fix CFS POTs Is fixed???

    We can have studies that go great and fixes cfs but patient still have POts and we think treatment didn't work.
     
  3. Kati

    Kati Patient in training

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    Hi @lnester7 i am sorry but which study are you talking about that talks about protein defect?
    The current research regarding POTS (the autonomic dysfunction) is looking at auto-antibodies. The current treatments are simply supportive care ( beta-blockers, blood volume corrections).
     
  4. lnester7

    lnester7 Seven

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    Repeat my post 377 on page 19: My Bold and underline to refer to the protein:

    The CCS scientists discovered chemical marks on the NET gene responsible for repressing or turning the gene off. They delved further and found that a repressor protein called MeCP2 together with a non-coding RNA (let-7i) was critical in the gene silencing.
    In another exciting development, the researchers, collaborating with the Baker Institute’s Professor Murray Esler, demonstrated that the NET gene could be re-activated by using the FDA approved drug Vorinostat in blood cells derived from POTS study participants.

    http://neurosciencenews.com/fainting-disorder-neurology-6293/
     
  5. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I'm not quite sure where that is at at the moment. I know they are working full speed ahead on writing the grant, and that the research has been very engrossing, and they're excited about making progress. They all spend all their time on this so maybe what's happened is that they got diverted by the research or the grant. I'm sorry I'm not really sure, and I am at the moment up so late with Whitney that Ron and I barely see each other.
     
    Last edited: Apr 7, 2017
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  6. greeneagledown

    greeneagledown Senior Member

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    Well, Ron knows best what should be prioritized, so I say keep doing what you guys are doing in whatever order Ron thinks is best!
     
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  7. Daisymay

    Daisymay Senior Member

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    Hugs x
     
  8. Matthew Jones

    Matthew Jones Senior Member

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  9. FredaF

    FredaF

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    Amazing work, but you look so tired Ron, please take care of yourself, your family needs you. Even more than all of us ME/CFS patients that are hanging on your every word.
     
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  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    (This is a section of a post Janet made in the Whitney updates thread--it is re-posted here as it discusses Ron's research.)
    Hi!
    The best thing is that Ron keeps making progress and comes home with new ideas and details about what is happening. They've been mostly working on the NIH grant proposal, which is ridiculously complicated and annoying with its requirements, but the silver lining is that their time spent on putting together the grant is helping their thought process and they are spending unending hours together talking about everything. Raeka Aiyar, PhD, the wonderful communications director for the Genome Center and a great scientist too, came down on the train from San Francisco on Saturday and worked all day with Ron and the team on the grant. These people are just amazing and really dedicated. I keep being in awe of them all.

    Rahim, the senior research associate at the Genome Center, has been making those nano sensor chip things so that they can do multiple tests of the cells at a time. Ron says he's almost got it done, after working out the inevitable glitches, so they will be able to ramp up the research like Ron talked about in his video very soon. He's going to make another video about it.

    I guess I should have put the research part of this on another, public, thread, but someone else can if they want. Just not all the stuff about Whitney. Or tell me is you think I should and I will. Maybe it's not enough info for that, I don't know.

    Anyway, keep on hanging in there. I think about you all every day, both the ones of you that I know and also all of you that I know are out there suffering and missing your lives. Again, I can't wait to meet you. Not to mention traveling all over the world to do it!!!!

    Like I tell Ben, every day, eat some ice cream! And try to think of one thing you're grateful for. That helps me a lot to keep my mind and spirit in a better place. It's hard.

    Love to you,

    Janet
     
    Last edited by a moderator: Apr 20, 2017
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  11. Alvin2

    Alvin2 Senior Member

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    Will this be an updates video, Q&A answer video or a combination by any chance?
     
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  12. duncan

    duncan Senior Member

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    I miss this genuine goodness in most other stuff I read.

    It gives me hope that people are not bad.
     
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  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Probably like the last pair, but we haven't worked out the details yet.
     
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  14. Jill

    Jill Senior Member

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    @Ben Howell , when they tested antidiuretic hormone was that a direct blood test or via sodium measures and volume excreted estimates. We have a dr that will test try most things with al. I just think he's ordered the wrong tests if an actual hormone can be measured because that wasn't on the forms . Any info appreciated .

    You ya all , sorry for the divergent tact
     
  15. A.B.

    A.B. Senior Member

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    Thanks Janet for keeping us informed.

    What projects would the NIH grant cover?
     
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  16. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Sorry but that's not public info at this point. But you can imagine that it involves their ongoing work.
     
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  17. greeneagledown

    greeneagledown Senior Member

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    Hi, @Janet Dafoe (Rose49). Refresh my memory. Can these nano sensor chip things be used as a treatment assay? Or is the treatment assay a different technology they're using? Thanks!
     
    Last edited: Apr 21, 2017
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  18. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Yes he is developing them to be an assay/diagnosis for the disease as well as a treatment assay.
     
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  19. dreampop

    dreampop Senior Member

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    I, too, have the vampire sleep schedule. So, your not alone.
     
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  20. greeneagledown

    greeneagledown Senior Member

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    Thanks for the update!
     
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