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66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of Their Experts

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Oct 28, 2013.

  1. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    >Today, 66 ME/CFS advocates sent a letter to Department of Health and Human Services Secretary Kathleen Sebelius, joining 50 ME/CFS experts in calling for the adoption of the Canadian Consensus Criteria (CCC) as the definition of the disease as well as for the abandoning of the efforts to involve organizations such as the Institute of Medicine (IOM) in any case-definition effort.

    Please read the blog (both have the exact same content) for information on signing the update letter (to be sent out soon) and on how you can help out now.

    Thoughts About ME blog: http://thoughtsaboutme.com/2013/10/...cretary-sebelius-in-support-of-their-experts/

    Paradigm Change blog: http://paradigmchange.me/wp/?p=249

    To go directly to the letter, click the following link:

    https://www.dropbox.com/s/pz18naeqerpy3g2/Signatures.pdf
    Last edited: Oct 28, 2013
    aimossy, Keela Too, beaker and 5 others like this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Delia and slayadragon like this.
  3. Delia

    Delia Senior Member

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    Signed. :)
    Ember likes this.
  4. alex3619

    alex3619 Senior Member

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    I just sent my email to sign as well, but the formatting changed ... its a hodgepodge, it didn't look like that on my screen.
    Delia likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Signed! :)
    Delia likes this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    From thoughtsaboutme.com

    http://thoughtsaboutme.com/2013/10/...cretary-sebelius-in-support-of-their-experts/

    beaker, Delia and Bob like this.
  7. Bob

    Bob

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    Good letter. Just to reiterate information posted above, if anyone wants to add their name to the letter, you can do so as follows:
    Delia, justinreilly and Nielk like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Alright everyone, start tweeting! I've been.

    I'd really like to see the signatures of Prof. Judith Richman and Dr. Deckoff-Jones, listed here as patient advocates, added to the list of 50 ME Experts who have signed the letter. No one seems to know who organized that letter. If anyone does, please let me know.
    Delia likes this.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Right, it's an email sent to advocates2sebelius@gmail.com

    With this info:

    Name (First and Last) Degree (Repeated?, see next words...), School Degree (does this mean Major and Minor?), School (Graduated college from?) Previous Job (year or age disabled) Advocacy Work (or just “Patient Advocate”) Internet Link ? Email Address?

    GG

    PS I probably should have asked for clarification before sending the email!
    Delia likes this.
  10. Ember

    Ember Senior Member

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    This letter troubles me for a couple of reasons. First, it defines advocate to include almost everyone: “If you have been an advocate for the disease, or if you would like to be, please send your signature for the update.” And second, it could provide an opportunity to grandstand anyone's change of view. I wouldn't want to see an advocates' letter distract from our experts' stand.

    We currently have a petition that's 2,175 strong.
    Last edited: Oct 29, 2013
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  11. Delia

    Delia Senior Member

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    The advantage of the letter as I see it, that can not be gleaned from petitions is the exact information of who we are:

    • The lazies and crazies that the CDC has tarred us with can be easily seen to be false in the resumes of the signers
    • The awful waste of talent and abilities
    • The ongoing length of disability and illness
    Part of this is becoming seen! Actually seen and real. So far we've been defined by everyone e,se. We've been in the shadows, sick and largely they've been successful in keeping us hidden and discredited

    The letter can't dilute other actions. Multiple actions are needed. Petitions, letters a multi-pronged campaign wins the day :)
    JohnnyD, Nielk and Ember like this.
  12. Ember

    Ember Senior Member

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    I notice that advocates who signed the letter have also counselled a “middle road.” Dr. Bateman's example notwithstanding, I hope that this letter only strengthens the multi-pronged campaign.
    beaker likes this.
  13. Delia

    Delia Senior Member

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    Just two that I know of Cort Johnson and Bob Miller.

    The reality is we must stand behind the experts who say NO to the iOM. They didn't say work something out with the IOM. And they did not say let us work with the IOM.

    And not stand behind Cort, Bob (sorry Bob, I like you!)and anyone else who tries to straddle the fence. It's an electric fence and you have to come down on one side or the other fast. But really, they are on the other side now. They take away the power of the experts letter, and the power of PWMEs who are standing tall.

    So when I say multiple actions I DO not mean multiple positions. No fence straddling.

    It is very rare to have a political issue be clear cut, and not need to hold your nose and try to be at the table.

    This is that very rare time.

    The only power is to not give any legitimacy to the IOM body as the organization to define the illness.

    By playing both sides, advocates give power to those who have too much and use it consistently against us, to our peril.

    By standing against the IOM as your only position you take power away from them and give power to yourself and the rest of us.

    It really is a stay in your seat at the front if the bus time. Do not budge. Do not let anyone, anyone convince you to give it up in hopes for some better negotiation later. The power will be gone once you leave your seat voluntarily.

    People do know there were a few Rosas before Rosa Parks, don't they? They didn't stay the course. :( Rosa did.

    The course is hard.

    Edit: previous attempts were made to sit up front and stay. People got scared, listened to promises, etc gave up and left their seats. Finally Rosa came. You know she was trained? She was prepared. This was not spontaneous in the way we think of spontaneous. We are preparing ourselves, training ourselves now. We must not let fear or seemingly convincing arguments for straying from the experts request to Sibellius get us out of the seat.


    :(
    Last edited: Oct 29, 2013
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  14. Ember

    Ember Senior Member

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    By your analysis, Delia, defection began before this advocates' letter was sent. Hence my concern that this letter not be positioned to jeopardize the multi-pronged campaign.
  15. Delia

    Delia Senior Member

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    I
    have been thinking about this myself.

    Often in advocacy there are important people you need on your side.

    Sometimes it's wisest to let them go.

    I have been trying all day to try and decide whether to request the letter only include signers who are not also working on trying to work with the IOM contract. Make the fence straddles decide and declare which side they are on,
    Ember likes this.
  16. leela

    leela Slow But Hopeful

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    I would think that signing a letter implies you are in agreement with the contents stated therein.
  17. Ember

    Ember Senior Member

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    Apparently, signing the advocates' letter is consistent with this statement:
    And with this one:
    These statements don't seem to support the stance that Llewellyn King describes:
    Last edited: Oct 29, 2013
  18. leela

    leela Slow But Hopeful

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    Yes, that is why it is confounding that a person who made those kinds of statements signed the letter.
    The letter is pretty clear in its message.
    beaker, RL_sparky and justinreilly like this.
  19. Ember

    Ember Senior Member

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