Chart Shows Low Chronic Fatigue Syndrome Funding - High Disability

Discussion in 'Advocacy, Contests and Events' started by Cort, Nov 28, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    From Brian Vastag

    This is a chart of funding vs disability adjusted years. Note that ME/CFS is above average in disability adjusted years but is easily at the bottom of funding (no surprise there.)

    (I don't see fibromyalgia???)

  2. KaLee

    KaLee New Member

    Hi Cort,

    Could you please explain how "disability adjusted life-years" was calculated. What is the significance of this number? Thanks.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Wikipedia can do it better than me...I think of it as productive years lost.

    I am trying to get the paper the chart was in...

  4. KweenPita

    KweenPita Active Member

    I guess Fibromyalgia doesn't count as a real disease. As my health provider informed me several weeks ago I take more Zanaflex then she does and she has MS! I felt like saying and Bitch, you're still able to work, and what does our diagnosis have to do with Tea in China? Is my diagnosis lesser than thou? If we're getting into pissing contests, I don't even have to unzip!

    I didn't because I went to Pain Specialist for Acupuncture a week later and she said wow your back muscles are really knotted up. I told her what Dr MS said. Pain Specialist said Did she examine you. I said Hell no. My muscles were so tight they pushed the acupuncture needles out.

    I, sometimes get so tired of fighting uphill, when encountering new physicians who may or may not take my symptoms and history seriously. I really don't want to put in the effort of educating them. I believe my diagnosis is wrong and lazy, too. But I believe it's their problem, not my lack of concrete symptoms, but their limited investment, knowledge and technology.

    I am just tired of Fibromyalgia being the bastard illness of lunatics, drug seekers and hypochondriacs. You would think people like me who can't fake 70/40BP, losing consciousness, sometimes accompanied with seizures, muscle spasms so bad they push out acupuncture needles, measured inflammation and measurable low immunities. You would think after doing this shit since 1991, plus more concrete evidence, just because they don't have a valid name for it, because it really goes beyond their paradigms, at least I could get some respect? I said well name it "we don't know what the eff you have disease inflammation of unknown origin", suits me, dumbass!

    Angry much, and thanks for leaving us of the death curve, guess it's not fatal or not taken seriously enough by doctors. I am guessing latter. Just saying what at lot of us feel. Didn't even have to unzip.
    Larissa likes this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member


    Great rant!

    We should publish it somewhere.
  6. KweenPita

    KweenPita Active Member

    Thanks I can really get my Dago B!#ch panties in bunch and my Doctor discovered b!#ching actually lowers my blood pressure! ROLF
    Merry likes this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member