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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Draft of letter to CFSAC: feedback appreciated!

Discussion in 'Action Alerts and Advocacy' started by zoe.a.m., Oct 13, 2009.

  1. zoe.a.m.

    zoe.a.m. Senior Member

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    Olympic Peninsula, Washington
    I'm just about senseless after having worked on this the past few days and I don't have it within me to proofread it and trust that I'll catch the errors. Any info or feedback would be great. I feel that other's letters are so fantastic and I can't evaluate whether mine will be helpful or just confusing.
    Thanks

     
  2. caledonia

    caledonia

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    Cincinnati, OH, USA
    Zoe, I found your letter mentioned in your response to mine. I think you did a great job, no need to feel that your letter is inferior to others'.

    I love, love, love that you took Reeves' quote in the NYT and used it against him. I wish I had thought of that one myself - brilliant!
     
  3. zoe.a.m.

    zoe.a.m. Senior Member

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    Thanks Caledonia! I think I've been in a vacuum with this, and ironically, more sick than I have been in months when trying to write it. Just posting it here helped me see mistakes right away.

    I looked up some info on Reeves and it seems like he has a strange history with CFS--being a whistleblower over the financial improprieties--but oddly attached to the amygdala-type theory. I don't doubt the improvements people make with that training, but why work for the CDC if that's your area of interest?!?!?

    I just hope all the letters received are read!
     
  4. Jerry S

    Jerry S Senior Member

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    Chicago
    Excellent letter!

    Thanks for making the tremendous effort to write it. It's really beautiful and hit all the right notes. I'm a big Richard Feynman fan, too, and it was nice to see him mentioned.
     
  5. kolowesi

    kolowesi Senior Member

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    zoe Testimony letter

    Awesome, Wonderful, Spectacular. Send it off to them, they need this one!

    You are very tactful and articulate. Many important points, explained so well.

    Would you send this to the NY Times as well? Maybe they would print it.

    Thank you so much. Hope you are sleeping:) Don't miss the deadline though!

    Kelly
     
  6. Dolphin

    Dolphin Senior Member

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    Well done - lots of good points/points I like.

    A few typos if it's not too late:
    "Another concern is the CDCs criteria (i.e. the empirical definition) which has been in identifying patients with CFS." - think you need a verb like "used" after "been"

    "t is not only doctors" - add i

    "expenisive" - should be expensive

    Don't feel you have to do this if you don't want:
    "This definition excludes the debilitating mark of this illness, post-exertional fatigue,"
    - the following is probably more accurate:
    "This definition does not require the debilitating mark of this illness, post-exertional fatigue,"
     
  7. zoe.a.m.

    zoe.a.m. Senior Member

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    Thank you for the specific suggestions Tom--I caught the typos in time (but had sent it before I saw your excellent comment about the "post-exertional" change. Kelly, thank you for the encouragement. I can't imagine sending it to The Times; do people really do that? Thank you too sarahg! Did you get to do official testimony? That is pretty exciting if so. Thanks as well Jerry! Great to hear you're a Feynman fan. I wished I could have been more specific (like a nice quote about research/objectivity, because he has many), but I just tried to channel the way he always seemed to speak as though doing the right thing was the obvious choice.

    I actually sent this off at 5:30 am and CFSAC sent me a reply email so I know that it was received and now I can hopefully go to bed by 5:30 pm!

    I look forward to getting more familiar with the forums; it's a lot to take in at first though!
     
  8. Jody

    Jody Senior Member

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    zoe.a.m.

    I'm here late in the game but I wanted to add my encouragement to you for what you've written.

    You did well.

    And, a belated welcome to the forums, zoe.a.m. :)
     

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