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Is there a single page fact sheet some place?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Oct 31, 2013.

  1. Andrew

    Andrew Senior Member

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    I'd like to get more people involved, not to mention that I've lost my own notes and am sicker than ever. What I'm hoping for a single page or message that has links to the IOM statement of work (or contract, or whatever it's called), the letter from the 50 experts, and tips on how to contact members of govt, and one of more model letters?
    Last edited: Oct 31, 2013
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  2. Delia

    Delia Senior Member

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    I am working on one with another person. Hope to have something soon.
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  3. Nielk

    Nielk

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  4. Delia

    Delia Senior Member

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    The billeted points in Mark's blog post today might make a good one page fact sheet!
  5. Andrew

    Andrew Senior Member

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    And where is that?
  6. Delia

    Delia Senior Member

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    On the front page today! On the blog. As well, I think there is thread but I am not sure where it is posted under.

    One thing: it doesn't have the who what where why and why and what we want them to do about it. I am still working on the talking points and a position paper that does just that, with another person who's been sick. It might be another day or two before it is ready for prime time.

    It is going thru the revision process at this point. It's been very hard!

    These two items will be good for talking with government representatives, officials, staff and the media,
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  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great, Delia. We really need this. One of our next steps should be, IMO, trying to meet or Skype (for those of us who are housebound) with members of congress or their staffers and I am clueless as to what I need to bring with me in terms of paper work.

    Delia, when you get a chance can you explain that and just the whole process of meeting with your congressman or where to look for a reasonably concise explanation on the web?

    Btw, Those bullet points came from asleep's good summary of the situation (though I don't fully agree that PANDORA has been coopted)

    http://forums.phoenixrising.me/index.php?threads/summary-of-the-iom-contract-situation.25932/
  8. Delia

    Delia Senior Member

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    Oh crap my brain just died. For a second I had just what I thought I needed to say! And it left! I hope this will work:

    The Issues Statement (sometimes called a Position Paper): this is handed to the staffer or representative if you go in person.

    If you call, tell them you will email or fax the Issues.

    This paper is a bit more in depth.

    The structure is:

    Introduction: what's the issue/problem?

    Background: support for the above, as well as for what you want them to do, below

    Recommendation: what you want them to do.

    The finished product might make people feel bad when they see it. It is boiling everything down into what is very much like a resume. We have to help them understand. We have to get them to not throw it in the trash or to be read later (never) pile. These are people who get hundreds of these everyday and they are a,ready very busy people.

    The Talking Points Paper:

    Sort of a who what when why what you want...

    This will help you keep on point when discussing things. It is brief: almost like prompts to keep on point in the message. (These can also be used to help people write letters, make phone calls, rebut comments on blogs or media sites etc...in some instances, the talking point paper can be handed out if you feel the person you are dealing with has no patience for much more.

    This may be briefer than items any if us have as these are for outsiders, who don't know and may not care or have a variety of reasons not to want too much information.

    These are the two papers we are working on. The position paper currently contains the links to important documents.

    You may choose to bring or send two additional best documents of importance. Hopefully the shortest ones that cover the best info you want them to have. But don't give the extra documents if you sense it will make them not read the main position paper. When you get people who seem interested you can always give them more. Don't push papers on very reluctant people. Just make sure they get the Position Paper for sure -reluctant or not.


    Hmm. I haven't even looked on the web for advice on meeting with representatives or their staffers! My training was years ago. Yeah, it might be best if I look for a good one! Holy cow. i'm in the middle if another revision of the papers.

    Some of The organizations that I received training from were: Protection and Advocacy (Federally mandated in each state to protect the safety and civil and human rights of children and adults with disabilities) The Kennedy Foundation, Partners in Policymaking (largely defunct in most states) and I forget where all else, if you want to look...

    I think there might be something about how to talk with your representatives in the files section if the FB page, but I can't remember.

    I'll try to think of some other places to look...

    We should definitely have this to pass out to everyone too!
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great! Thanks for doing all this.
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  10. Andrew

    Andrew Senior Member

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    Here's my resource list.

    General Resource and Overview: http://www.prohealth.com/ME-CFS/lib...ce=EM100913C&utm_medium=em&utm_campaign=MECFS

    Contacting HHS (read message and signature line) http://forums.phoenixrising.me/index.php?threads/just-a-thought.26103/#post-399361

    More on contacting HHS: http://forums.phoenixrising.me/inde...nst-the-iom-contract.25664/page-7#post-399404

    IOM project description http://www.iom.edu/Activities/Disea...phalomyelitisChronicFatigueSyndrome.aspx?msg=

    Letter from 50 (not 35 experts) https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter final 10-25-13.pdf

    Regulation that allows for termination of contracts: http://www.name-us.org/AdvocacyPages/OtherActions.htm#Simplified_Explanation

    Anyway, thanks for the posts. I'm having sort of a unique problem here in that my brain has gone into analysis paralysis, but this has helped me shake things loose.
    Last edited: Nov 6, 2013
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  11. JT1024

    JT1024 Senior Member

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    Not sure if anyone has seen this petition:

    https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/

    We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts and adopt the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS.
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  12. Delia

    Delia Senior Member

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    Oh I had that too! It's overwhelming. I feel on a roll right now-so it must have shaken loose!
  13. Andrew

    Andrew Senior Member

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  14. Delia

    Delia Senior Member

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    Thanks Andrew! I was looking for that last night! I wanted to add it to my references in the Issue Paper and talking points!

    I swear to god, I thought I saved everything in one folder, but every time I go to find something specific it's not there. Then I've got to go thru my other folders in case i saved to the wrong one and/or back through messages. And my brain gets so fried!
  15. Andrew

    Andrew Senior Member

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    I just corrected a link on my list above. The link to 50 experts was pointing to the wrong list before.

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