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The puzzle solver - Stanford Medicine article about Ron Davis / Whitney Dafoe

Discussion in 'General ME/CFS News' started by Kyla, May 16, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Wow. This is heartbreaking.

    This is very comprehensive and powerful article.
    Very much worth reading.

    Read here:
    http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html



    excerpt:
     
  2. Sasha

    Sasha Fine, thank you

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    Superb article.

     
  3. NL93

    NL93 Senior Member

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    "Of the 700 measurable biochemicals or “metabolites” plotted on the chart — including amino acids, carbohydrates, lipids and nucleotides — Dafoe has abnormal levels of 193."
    Interesting. I am very curious to know if the same pattern is seen in the other severely ill patients. It probably is.
    This disease causes so much suffering, there are thousends of Whitneys out there, suffering unimaginably, we really need some answers quickly. Dr Davis is clearly doing all he can to find answers, i am very grateful for that. Such a hero.
     
  4. Sean

    Sean Senior Member

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    An article both tragic, and hopeful because it is finally starting to be taken seriously by senior biomedical researchers.
     
  5. JaimeS

    JaimeS Senior Member

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    Great, but guys, this article leads to that article: http://med.stanford.edu/news/all-ne...lores-how-relationships-influence-health.html

    The article that starts this thread is 100% biomedical, but they put it in an issue about 'relationships' and ending the stigma of being mentally ill. It's unfortunate.

    ...I don't think the theme overall is unfortunate, to be clear; the issue also contains info regarding our intestinal microbes and our relationship to them! It's more like this overview's context is a bit off-putting.
     
    Last edited: May 17, 2016
  6. halcyon

    halcyon Senior Member

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    I think we all assume that Stanford must be great because Dr. Montoya works there and they're home to the ME/CFS Initiative, but they definitely have psychologizers and ME deniers on their staff, make no mistake.

     
    Gingergrrl, Mary, Jennifer J and 6 others like this.
  7. BurnA

    BurnA Senior Member

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    For me the most interesting part of the article was the part about Ron Davis and penicillin. ( I knew most of the other details before, I'm not taking away from the article )

    We take antibiotics for granted it's hard to imagine what it must have been like living and being Ill during one of the biggest medical breakthroughs of all time. Perhaps we might get to experience that feeling too someday.
     
    JaimeS, Bob, Sidereal and 2 others like this.
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I'm Whitney's mom. Thanks for all your support. Getting messages from around the world is amazing and really makes a difference. You guys know how isolating this disease is. That goes for caretakers too! We are really excited about all the new findings and the new study. It can't happen fast enough for us!
     
    Joh, panckage, Gingergrrl and 29 others like this.
  9. *GG*

    *GG* Senior Member

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    Sending you positive thoughts and prayers for your son to pull out of this. I had a crash in 2009, I didn't need anyone to take care of me, but was pretty much housebound for a month or 2, was out of work for about 3 months. I can only imagine that it is going to take even longer for your son to pull out of this :(

    I wonder if I was in such sad shape if my family would grasp the seriousness of my illness? They probably would be now, because I am living with some of them. When I crashed in 2009, I was living alone. Had the 2 day in a row CPET testing done in 2010, my sister went with me, but she doesn't seem to want to get it now. It's not convenient for her.

    GG
     
    Janet Dafoe (Rose49) likes this.
  10. *GG*

    *GG* Senior Member

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    I came down with this in 2003, caught Mono, I was 33 YO then. I am a male as well, and I find it so sad to hear of these other males who are in such bad condition.

    Also want to add, that my Dr says I fit the IOM criteria for ME/CFS and my application was sent into SMCI and I should become part of the Biobank! I am willing to be studied and move this science forward! I have a BS in Science :)

    GG
     
    Last edited by a moderator: May 19, 2016
  11. mango

    mango Senior Member

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  12. Bob

    Bob

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    The article has been highlighted in Forbes today...

    http://www.forbes.com/sites/paulhsieh/2016/05/31/three-tales-of-health-technology-and-freedom/




    Useful quote to have in Forbes...
     
  13. Sasha

    Sasha Fine, thank you

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    Is there a link to donate to the OMF? If not, is anyone able to provide on in the comments section (if there is one)? My ad blocker won't let me proceed to the article.
     
    Gingergrrl and Comet like this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    I can second that this is true from personal experience. I have never seen Dr. Montoya or been to the CFS Clinic and have nothing but respect for Dr. Montoya. But I saw another doctor at Stanford, who I will not name, who found multiple serious medical issues wrong with me, offered me treatment options, and then retracted them and re-labeled my entire case as "psychosomatic" and sent letters to my doctors without my permission stating such. Luckily, all of these doctors knew me very well and found the letter to be nonsense b/c it was obvious to them how ill I am and how much my health has decompensated over the last three years. But a new doctor who did not know me believed the letter and was not willing to work with me because of it. Stanford like any institution, has true heroes like Ron Davis and doctors who are solidly in the psychosomatic camp.

    @Rose49 Sorry I could not get the Twitter post to properly copy from above. I just wanted to say that I am so sorry that the surgeon at Stanford put you and your family through this during such a stressful time as having a jtube installed for your beloved, Whitney. Did he not know that you are a therapist yourself (or just not care?) I wish I could share more details of what the Stanford doctor did to me with those letters but cannot at this time and left feeling that there is no real recourse.

    Of course the best revenge is to prove him wrong by getting treatment and getting better. My two main docs are working very hard right now to get a treatment approved for me. The irony is that the Stanford doc actually found some abnormalities that no doc had ever found. We were very grateful and expected him to take full credit for the discoveries but instead, dismissed his own findings as psychosomatic. We cannot make sense of that no matter how hard we try and with time, we will just have to let it go.

    I feel a connection to you knowing that you have experienced something similar. I want you to know that I continue to pray for Whitney and your family every day. I met your husband, Ron, in Oct 2014 at the a pre-screening for Forgotten Plague and even tough I only spoke to him briefly, he made a real impression on me and gave me a sense of hope. Our community can never thank him enough for all that he is doing for us.

    I believe that the illnesses represented on this board will turn out to be a variety of sub-groups, or maybe even several different illnesses with similar pathology, but we will never learn the truth without Ron, OMF, and the Severely Ill/Big Data Study working to solve this.
     

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