Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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ME/CFS Alert - Episode 78 - Mary Dimmock

Discussion in 'General ME/CFS News' started by Bob, Apr 14, 2016.

  1. Bob

    Bob

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    Gemini, Johannawj, shannah and 17 others like this.
  2. sarah darwins

    sarah darwins I told you I was ill

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    Sheesh. I hadn't realised there were commercial providers of clinical guidelines. The one they discuss - Uptodate - is part of Wolters Kluwer ... "a global leader in professional information services. Professionals in the areas of legal, business, tax, accounting, finance, audit, risk, compliance and healthcare rely on Wolters Kluwer's market leading information-enabled tools and software solutions"

    And they're recommending CBT/GET.
     
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  3. shannah

    shannah Senior Member

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    I wonder how Mary went about accessing treatment of Rituxan for her son.
     
  4. Justin30

    Justin30 Senior Member

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    Probably OMI is my guess. Dr Kolgenic doesnt even see new patients...he's full
     
  5. mfairma

    mfairma Senior Member

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    Hey @shannah
    I got it through a Rheumatologist in Florida, after trying Kineret for around 8 months or so. I posted about it once or twice before somewhere here. We have had to pay most of the infusions out of pocket, but have gotten the cost more under control in the last year or so by switching to a treat-to-target dosing schedule, where I only get infusions roughly once a year or if symptoms are beginning to worsen again.
     
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  6. valentinelynx

    valentinelynx Senior Member

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    Yep. And these are the sources that provide the guidelines that your insurance company uses to determine whether you qualify for an expensive drug or treatment. Access is limited by expensive membership fees, not public domain.
     
    sarah darwins, Sean and Valentijn like this.
  7. Sasha

    Sasha Fine, thank you

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    Excellent interview by Mary. :thumbsup:
     
    Gemini, Comet, Amaya2014 and 2 others like this.
  8. BurnA

    BurnA Senior Member

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    This is a really excellent interview. A very concise, articulate picture of the current status of ME.
     
    LiveAgain and Comet like this.
  9. mfairma

    mfairma Senior Member

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    Mary, my mom, never fails to be knowledgeable, articulate, and reasonable, all qualities of which this community needs more, but she lacks fire in how she communicates the problems in this disease. Our community needs more fire, much, much more, but balanced by knowledge, readability, and clarity of communication.
     
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  10. BurnA

    BurnA Senior Member

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    The community needs fire but for me an advocate who is knowledgeable articulate and reasonable is to be cherished. Fire is good for getting attention and rousing the masses but once that is done the fire is less important than being articulate and knowledgeable.
     
    Comet likes this.
  11. mfairma

    mfairma Senior Member

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    You can be forceful, fiery, and passionate, while still being articulate and knowledgeable. They are not mutually exclusive qualities.

    Edit: But I do agree about cherishing those qualities in this disease. Certainly my mom's health makes it easier for her to be articulate than patients, but those qualities are something we need more of, I agree.
     
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  12. Amaya2014

    Amaya2014 Senior Member

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    @BurnA I agree wholeheartedly!

    A fireman will have far more difficult trouble with a slow, steady burn that proves resistant to being extinguished than a roaring flame that may be fierce but quick to die out.

    @medfeb thank you for your advocacy and keep it burning!
     
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  13. TiredSam

    TiredSam The wise nematode hibernates

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    Excellent interview. The magnificent "Thirty Years of Disdain" and contributions such as this provide all advocates, fiery, calm or otherwise inclined, with invaluable ammunition.
     
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  14. Comet

    Comet I'm Not Imaginary

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    I didn't think she lacked anything. :) What a great interview.
     
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