Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

My 'This American Life' Story Pitch

Discussion in 'Advocacy Projects' started by Rich D, Aug 24, 2015.

  1. Rich D

    Rich D

    Messages:
    39
    Likes:
    93
    I sent this in today - keep your fingers crossed!
    ______________

    The problem with the disease I have is that I am not dying.



    It may be hard to believe, but my disease is more debilitating than cancer, HIV, and multiple sclerosis. Many people with this disease have been bedbound for years with no hope of recovery. The isolation we endure may be hard to fathom.



    We often cannot move, endure chronic pain, suffer from severe insomnia, and cannot tolerate noise or visual stimulation. Our brains go on overload, so we have difficulty thinking.



    We are stuck in our homes, often alone and in bed. We cannot engage in much social contact because socializing is too taxing, so we suffer in isolation. We cannot muster the energy to talk.



    Many of us cannot work. We used to be very active, but now just going to the grocery store is a dream.



    There is little hope for recovery.



    With a disease like this, how much funding has been provided for research into this disease? Next to nothing.



    Unfortunately, I have a disease that is often belittled and disrespected: Chronic Fatigue Syndrome.



    It’s a fancy name for a disease that can be so debilitating, it often renders its victims frozen. With so many of us suffering to such an incredible degree, one would think that there would be a plethora of funding to uncover the roots of this disease and find treatments. But unfortunately, the opposite seems to be happening. Just for one example, it is hard to believe that Dr. Ronald Davis, Director of the Stanford Genome Technology Center, who is also the father of perhaps one of the worst cases of this disease on record, continues to have his funding proposals refused.



    One of the reasons is probably that we are not dying, so we are not taken seriously. This is a disease with unknown etymology. There are no known tests (yet), and so people often dismiss the symptoms as just tiredness. But it is clearly a lot more than that.



    If only more of us were dying, then maybe we’d be taken more seriously.



    Richard Deitz, Ph.D.
     
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,140
    Likes:
    23,350
    USA
    @Rich D Excellent and very well written! Am confused, who did you send it to?
     
  3. Rich D

    Rich D

    Messages:
    39
    Likes:
    93
  4. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,227
    Couchland, USA
    FYI you meant etiology, not etymology, though the etymology of the stupid name is indeed incomprehensible ;)
     
    Hutan, Effi and SickOfSickness like this.
  5. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,073
    Thank you for doing this on behalf of all of us with ME.
    I hope that they consider your proposal and that they do diligent research.
    Even when you don't get an immediate response it's still out there and sometimes later serendipity strikes. :)

    Just a mention though that while technically true that no-one dies directly from ME the illness has a high suicide rate as a result of the horror of the illness and I believe that some would argue that a few have died of complications (Sophia Mirza) although I'm not overly familiar with that.
     
    rosie26, Hutan and Effi like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,140
    Likes:
    23,350
    USA
    Oops, sorry I am not familiar with pod casts and thought that was the title of your story! And I do agree that people with ME die from heart failure, suicide, malnutrition etc but not sure if you want to mention that. Thank you for writing on our behalf.
     
    ahmo likes this.
  7. Rich D

    Rich D

    Messages:
    39
    Likes:
    93
    Yeah, true, that did cross my mind. But I was trying to simplify the message. I'm sure there are other issues with how I said things, but I went for simplicity and brevity at the cost of some accuracy.
     
    Effi likes this.
  8. Rich D

    Rich D

    Messages:
    39
    Likes:
    93
    Yikes! I got that one wrong. I need a proofreader...
     
  9. Tammy

    Tammy Senior Member

    Messages:
    1,060
    Likes:
    1,379
    New Mexico
    I agree. If we looked like we felt and were dropping like flies I think it would be a different story. Or not even dropping like flies........even say a quarter of the people with this disease were dying ....I think it would get more attention.
     
    Last edited: Aug 24, 2015
    Effi and Gingergrrl like this.
  10. ahmo

    ahmo Senior Member

    Messages:
    4,329
    Likes:
    6,508
    Northcoast NSW, Australia
    Hutan likes this.
  11. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,551
    Europe
    very well written, @Rich D , concise and to the point. keeping my fingers crossed!
     
  12. Snookum96

    Snookum96 Senior Member

    Messages:
    290
    Likes:
    552
    Ontario, Canada
    That's a great description! Very well done!
     
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Messages:
    4,660
    Likes:
    5,450
    For the technology challenged, it is was originally, and continues to be, an NPR radio show.
    People with ME also die of heart failure at a younger-than-average age and have a higher rate of pancreatitis. However, the medical profession considers ME non-fatal.
     
    ahimsa, Gingergrrl and Effi like this.

See more popular forum discussions.

Share This Page