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Justin's Written Comments for IoM Panel First Meeting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Jan 15, 2014.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hi everyone,

    EDIT: here is my final draft which I have sent in (the attached PDF is also updated to the final draft).

    I have drafted some comments that I'm going to submit to the IoM panel before their first meeting. (I am not going to present comments in person).

    Like last time, I would appreciate it if you could support my comments, and/or any others you like such as Jeannette Burmeister's (which she has not posted yet) whether or not you send in your own comments. And, considering that we all have such limited health and energy, I would also suggest that instead of writing your own comments, you consider writing in and simply endorsing this and/or anyone else's comments you like.

    If you wish, you could use the saved energy in the fight to stop the contract, which fwiw, I think is more important than interacting with IoM. (I am of course not trying to stifle anyone's voice, please write your own comments if you wish, just suggesting an energy-saving measure). Or feel free to use excerpts (no attribution needed).

    I have also attached a PDF file of the letter.

    I haven't sent these in, so you can make comments if you see any mistakes, etc.

    If you don't have time to read the letter here are my points:
    • The Contract Must be Cancelled
    However, in the case that the contract proceeds, God forbid:
    • Non-Experts Must Defer Completely to the ME/CFS Experts
    • Adopt the Canadian Consensus Criteria
    • The ME/CFS Definition Must of Course be Entirely True and Accurate
    • Adopt the Term "ME"
    • Neither Employ the Invalid Reeves or “Oxford” Criteria, nor the Term "CFS"
    • Health and Human Services has Set Up this Process to Arrive at an Inaccurate Definition Once Again
    • Please Listen to Representative Experts and Patients like Jeannette Burmeister, not CAA and PANDORA
    • At This First Meeting, Please Publically Disclose all Relevant Information About Yourselves

     

    Attached Files:

    Last edited: Jan 21, 2014
    Wally, Dreambirdie, Wildcat and 2 others like this.
  2. jspotila

    jspotila Senior Member

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    Justin, I can't speak for any of the other invited panelists, but I am commenting for the same reason you are: to mitigate the damage that this IOM study may cause. It's unfortunate that you don't think I'm worth listening to.
     
    beaker likes this.
  3. Denise

    Denise Senior Member

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    If you want to submit written public comment for the open session of January 27th, 2014 IOM meeting on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome


    IOM has said: “It would be most useful if comments are focused on the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”

    Anyone can submit written comment to the meeting. (No limit on length.) What are you going to tell them?

    If you submit by Jan 22nd the committee will get a copy of them before the meeting on Jan 27. Use this email address – mecfsopensession@nas.edu. Comments submitted after Jan 22 will still go to the committee, but possibly not until after the meeting.

    All comments go into the public access file.

    Additional info: http://iom.edu/Activities/Disease/D...elitisChronicFatigueSyndrome/2014-JAN-27.aspx

    After January 27, send written comments to the project email address (mecfs@nas.edu).

    Reminder -the Statement of Work for this project – obtained by Ms Spotila – can be seen here: https://dl.dropboxusercontent.com/u/57025850/MECFS IOM SOW.pdf .

    The tentative agenda for the January 27th, 2014 open session of the meeting on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
     
    beaker and golden like this.
  4. golden

    golden Senior Member

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    Justin

    Thankyou for starting the thread and sharing your letter.

    I am not yet up to speed on all the politics. It is looking fairly accurate to me.

    I am not feeling very well so i appreciate some of your comments which brought me additional clarity. I have a framework now to do a bit more research.

    i don't yet understand all of it. i hope to before the deadline.

    i hope this thread can bring further insights...

    Golden

    Hopefully
     
  5. golden

    golden Senior Member

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    @Denise

    Thankyou very much for that information.
     
  6. golden

    golden Senior Member

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    Can i just ask a silly question. i cant find the answer.

    The Hummingbird Foundation for M.E. with Dr.Hyde -

    Is their view that the CCC and ICC are incorrect?

    This, in their view, would be because M.E. is a testable illness with a specific defined pattern with incubation of x - amount of days etc.

    And so M.E. is defined and testable and visible with a SPECT scan.

    If its not visible then clinical efforts should be in finding the physical cause eg. vitamin D deficiency and all the other listed physical tests available
     
  7. golden

    golden Senior Member

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    jspotila

    may i ask are you on this panel?

    thanks.
     
  8. Denise

    Denise Senior Member

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    justinreilly, beaker and golden like this.
  9. golden

    golden Senior Member

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  10. jspotila

    jspotila Senior Member

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    I am. Thanks @Denise for posting the agenda link.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @golden, I don't know a lot about Jody Hummingbird's views so I can't say.
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jennie, I am sorry if I offended you. I probably wouldn't be happy if you said the same of me.

    I do think you are very worth listening to.

    I made a mistake, Robert Miller is not speaking, so I am going to modify what I wrote to focus on CAA and PANDORA.

    Why I wrote this may seem like splitting hairs, but I don't think it is. I was thinking about the overall composition of the invited speakers. Even without Bob, it is skewed to one view and that's what I said. I said don't listen to CAA and PANDORA, they don't represent the vast majority of patient views on this one. I didn't say don't listen to you.

    But I asked that views like Jeannette's, who was not invited to speak, be given greater weight than her small proportion of the public speaking time would normally indicate. She is currently the most active patient advocate and a lot of people are behind her and agree with her. The proportion of patients that agree with PANDORA and CAA is tiny.
     
    Dreambirdie likes this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have edited that section above. I may or may not change it further.
     
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  14. golden

    golden Senior Member

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    It worries me that you don't know about Dr.Hydes position .

    I am after an accurate overview and summary of each group without personal bias.

    Golden
     
  15. beaker

    beaker CFS/ME 1986

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    Good move Justin.
    She's been working very hard getting contract information and background checks on panel members and writing her blog to share in what seems, at least to me, to be a very transparent effort to support the patients -- including herself in a positive way. Thanks J.S. from one too sick to do that work.
     
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  16. Ren

    Ren Primum Non Nocere

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    Thank you Justin, Jennie, Jeannette - our Gentleman and Ladies Justice. :)

    (And @justinreilly, I'd like to buy an "n" for "Jean(n)ette" in bold above, please. :D)
     
    Last edited: Jan 16, 2014
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  17. jspotila

    jspotila Senior Member

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    Thank you, Justin.
     
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Done, thanks for the catch.

    I have changed my summary to:

    "In conclusion, I strenuously urge you to follow the two main points of this letter:

    "(1) Always defer completely to the ME/CFS experts on the panel; and

    "(2) Adopt the Canadian Consensus Criteria (on the merits, and more importantly, because the ME/CFS experts overwhelmingly demand it)."

    I think we should all hammer home these two main points, especially adopting CCC because the experts demand it.
     
    Last edited: Jan 17, 2014
    Ren likes this.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have Dr. Hyde's book and have read it twice. I think he's great. He has a different view of ME from the general consensus among the experts of what ME is. I am not expert enough to say who is right.

    He didn't sign the 50 expert letter.

    Regardless of his viewpoint, out of political necessity, I think we really need to support the 50 expert letter which demands CCC. Sticking together as a united front as much as possible is essential for us to win this battle and this war.
     
    golden likes this.
  20. Ember

    Ember Senior Member

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    Where is the logic in demanding an ME/CFS definition and an ME label?
     

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