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A unofficial update on Prof Davis and Janet Dafoe...

Discussion in 'Latest ME/CFS Research' started by Ben H, Jan 6, 2017.

  1. Ben H

    Ben H OMF Correspondent

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    Hey Guys,

    A bit of an unofficial post here, but I think its important to let you guys know, for the sake of hope, how hard Prof Davis, Janet Dafoe @Rose49 ,Whitney himself and all the research teams are working for us.

    Last night is one-of many-examples.

    Whitney needed blood to be taken for research samples. Unfortunately it did not go to plan and had some complications with the PICC line which resulted in a big delay, and a nurse needing to be called out.

    Instead of postponing research for 'only' another week, the job was finally completed at 10pm and Prof Davis took the blood sample to the lab himself, doing prep until midnight. The research associates then stayed up all night doing the experiment that needed to be done, so that the research was completed on time, and a week would not be wasted.

    Inadvertently this meant that Janet's schedule meant she ended staying up till past 6am because Whitneys schedule was shifted by the events of the evening. Janet does this every night, without fail, so that Prof Davis can continue his research as fast as possible. Then they swap and Prof Davis looks after Whitney (having come straight from the lab) while Janet sleeps.


    This is not an uncommon occurrence, and I was reminded just how hard everyone is working for us, and how often these things happen, and the research team just gets the job done, for the sake of working as fast as possible to alleviate the suffering this disease causes. This is happening around the clock, 24/7, though we are not able to see it.


    Anyway, I thought it pertinent to post and will hopefully provide hope for all.


    B
     
    Last edited: Jan 6, 2017
    Cinders66, chickpea, J.G and 123 others like this.
  2. Molly98

    Molly98 Senior Member

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    Thank you @Ben Howell for your post, this really brings home just how hard they are all working to get to the bottom of this awful disease and find treatment. My heartfelt thanks goes out to Ron, Janet ( @Rose49 ) and Whitney and the research team for all their hard work and for the sacrifices they are making and their steadfast commitment. Thank you so much.
     
  3. Cheesus

    Cheesus Senior Member

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    Not all heroes wear capes.

    (Although if Ron and Janet want a pair of matching capes, I reckon the community could get something organised ;))
     
  4. Sasha

    Sasha Fine, thank you

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    Whitney is so lucky to have such a great family, and we're so lucky to have Dr Davis and his research team on our case.

    Hope you're catching up on your sleep, @Rose49! :bouquet:
     
  5. bertiedog

    bertiedog Senior Member

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    I second that! Thanks so much to everyone concerned and @Ben Howell for the update.

    Pam
     
  6. Gamboa

    Gamboa Senior Member

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    I am too unwell to be able to put words together to express how I feel. Thank you just doesn't seem enough to express my extreme gratitude to everyone involved in this team effort.

    Claire
     
  7. perrier

    perrier Senior Member

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    The urgency so many of us endure is clearly also written on the faces of Dr Davis and Dr Dafoe. And the weight of our waiting, waiting for some treatment for our children, must surely also affect them as they see how many seriously ill young people there are lying in their rooms battling hourly the sensation of sickness and feeling like they are dying or close to death. Thank you to dr Davis and team. Please indicate how else we may help , even in very small ways, in
    addition to contributing. Our children young or adult are struggling to hold on; the torment they endure exceeds the range of the familiar.[/QUOTE]
     
    Last edited by a moderator: Jan 6, 2017
  8. Sidereal

    Sidereal Senior Member

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    We are extremely fortunate to have people like Prof Davis and Mrs Dafoe (and their colleagues) fighting for us.
     
  9. Comet

    Comet I'm Not Imaginary

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    Thank you Drs. Davis and Dafoe (@Rose49), Whitney and Ashley for your unending dedication and sacrifice. You are giving hope to so many. :heart::heart::heart::heart:

    Big thanks to @Ben Howell for all your hard work too!! :heart:
     
  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Just woke up and saw this. Thank you. It's so nice to have a friend in England who's awake while I'm up all night and understands and I can text. Ben is a wonderful friend. I can't wait till you are all better! And till I can have a normal life and sleep schedule! Love to you all. Hang in there! Ron is planning a webcast soon. I'm hoping next week. I'll let you know. He's so focused on the research and he doesn't want to slow it down by taking time out to do that or even to write a paper. But he's discovering a lot using Whitney's blood cells and is narrowing down the molecular mechanism of this disease. He's very encouraged and optimistic.
     
  11. bel canto

    bel canto Senior Member

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    Thank you, Rose, for all you and Ron do. And for giving us glimpses of your lives, and of Ron's optimism. We are so very grateful!
     
  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    @Rose49 just need to express my eternal gratitude for you, Ron & Whitney. I firmly believe that Ron & his team is the ones to solve this, because their motivation could not be realer. A close second is Haukeland University hospital.

    Have as good weekend as possible<3
     
  13. Jhillzer07

    Jhillzer07

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    You guys are amazing! Thanks for all you do!
     
  14. ash0787

    ash0787 Senior Member

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    I'll watch if you do a live stream, most people use youtube aka google hangouts but you can also use facebook but the thing with that is you need an account to see it
     
    Janet Dafoe (Rose49) likes this.
  15. otherworldly

    otherworldly very severe

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    this is just so exciting! i almost can't believe it! but then again, the instant i heard about the davis/dafoe family, i said out loud, which is rare b/c i can only speak 3 monosyllabic words spaced out thru the day "THIS man is gonna figure it out. i just know it" :)
     
  16. otherworldly

    otherworldly very severe

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    @Ben Howell , @Rose49 ..... i'm really curious... as a former lab tech & researcher & now very severe patient, won't the stress of the situation on whitney having trouble w/the PICC skew the results? or does the stress not so much effect this particular test? or perhaps it doesnt make a difference in this case since its still early in research. i'm just real curious about this, since being off any sort of schedule is super duper stressful for us, esp. the very severe. ty.
     
    Last edited: Jan 7, 2017
    Janet Dafoe (Rose49) and Mel9 like this.
  17. ash0787

    ash0787 Senior Member

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    otherworld it depends on what the test is for, but typically if a test result could be voided by such a thing it wouldn't be a very useful test, davis probably wouldn't use that sort of approach, he knows metabolism varies over time of day etc. If hes looking for something like antibodies it shouldn't be affected by it. Also its possible that whitneys stress level is always so high that something like that wouldn't make much difference.
     
  18. otherworldly

    otherworldly very severe

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    yes, i figured as such...my brain is like mush so there was a delay in that consideration! yes, i'm certain the possibility of whitneys stress level always being high is spot on.....ty!
     
    Janet Dafoe (Rose49), Ben H and Mel9 like this.
  19. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I wish we could offer more practical support. This intensity doesn't sound sustainable.
     
  20. rebecca1995

    rebecca1995 Apple, anyone?

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    I'm so grateful to Ron, Janet, Whitney and everyone at Ron's lab and OMF. Thank you!
     

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