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Occupy CFS: My Feedback to IoM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Dec 20, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    occupycfs.com/2013/12/19/my-feedback-to-the-institute-of-medicine/#comments

    Delia likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Regarding this excerpt:

    I commented:

  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    What Else Have We Missed?

    I am now wondering what else is out there that we have missed! We have seen that while Jennie's group did a lot of hard work and must be thanked for that, they have also missed some obvious fatal flaws in at least one panelist. It not only is very unfair and extremely inefficient, but an impossible burden for disabled patients to uncover the biases, conflicts and incompetency of the panelists!

    Regardless of IoM policy, it is simply unacceptable for prospective panelists not to list relevant biases or mention that they have published on the topic before. The burden should certainly be on them to disclose, since they already know if these problems exist and what they are, rather than on extremely disabled patients to have to do extensive research, almost all of which is simply impossible if one does't have free access to medical journals.
    Delia, AzizaJ, beaker and 1 other person like this.
  4. Ren

    Ren ...

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    Also on occupycfs.com, comment 4 by Anushka discusses issues with Jason:
    http://www.occupycfs.com/2013/12/18/iom-panelists-tl-dr/#comments

    Anyone know if our statements to IOM will be available to the public??

    I want each voice to count. And for my own records and education, I want to know what's being said and how many people are saying it.

    EDIT:
    According to occupycfs.com (under Submitting Feedback), IOM may put some comments in the public file but not all.

    -----------

    Dear public,
    Please send your comments on Ultra Plush three-ply.
    We care,
    your Government
    Last edited: Dec 20, 2013
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  5. Ember

    Ember Senior Member

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    I was surprised to see Jennie's team taking a swipe at the ME-ICC definition:
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't understand this, but I think it's funny. :thumbsup:
    Ecoclimber likes this.
  7. Ecoclimber

    Ecoclimber Senior Member

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    Nothing like a good flush!
    Ren and justinreilly like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If you've written your letter to IoM about the panelists, post it here so we can get inspiration.
    Delia likes this.
  9. jspotila

    jspotila Senior Member

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    We weren't trying to swipe at the ME-ICC. We were quoting Lenny Jason's research, which is referenced in that footnote.
    AzizaJ and taniaaust1 like this.
  10. Ember

    Ember Senior Member

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    Have you considered the content of the study that you were describing and referencing, Jennie? Did you follow up on Anushka's invitation to “have a look what [Dr. Jason] plans to do with the ME ICC and why?” Have you read the discussion here?

    You were taking a swipe at the ME-ICC whether or not that was what you were trying to do.
  11. Ren

    Ren ...

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    Well, it was transcribed in a moment of frustration, and I see it might have been more clear as "...send your comments (written) on Ultra Plush three-ply..." for the benefit of the upper food chain...

    I superficially searched for the most "luxury"-esque descriptor of toilet paper, hence "Ultra Plush" and "three-ply" (which is of course disturbing in and of itself) ...

    Anyway, it was (attempted) humor as a means of coping... :)

    Edit: And I've been isolated, so my "learned niceties" may be faltering of late...
    Last edited: Dec 21, 2013
  12. Nielk

    Nielk

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    Here is mine -

    Thank you for your help - J. spotila and J. Wiley
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  13. taniaaust1

    taniaaust1 Senior Member

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    Unfortunately after one sends the letter, there is no way to copy it. I sent two letters and wish I'd kept copies. In my letters I said that I didnt see the balance being good at all as the non experts in the time they have will never be able to understand this disease as it takes years.. so far more experts then non experts are needed on the panel.

    I also asked for the one who has done studies in neurasthenia be removed.. as I see someone in that field on the panel as being quite offensive to us and she is quite likey to hold baised views.

    My second email to them said that I thought Leonard Jason should be the pscychologist on the panel due to his experience in the field and in forming definitions.
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Here is my letter in PDF form. It is long and has footnotes so thought PDF better.

    I suggest that anyone who has not yet written in simply endorse a letter or letters that they like, such as mine or Gabby's, if there is one you agree with. You can also of course say you endorse a letter with deletions (made clear by blacklining) or additions if you wish. This will save some precious energy.

    Of course, if you don't agree with our letters, pls send in your own if you think 'engagement' is appropriate.

    Anyone else who writes a letter, again, please post it here so others can get ideas or simply endorse your letter to the IoM.

    Send to: mecfs@iom.edu

    Attached Files:

    Last edited: Dec 22, 2013
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  15. Delia

    Delia Senior Member

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    I have sent emails endorsing Justin, gabby Jenny Spotilla and David egan's letters.

    If there are more I can read somewhere I'd like to endorse those too.
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  16. Chris

    Chris Senior Member

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    Hi, I sent this letter as a personal addition to the letter that Jennie sent, on which I collaborated and which I signed, but then felt I had more to say along the same lines. Chris

    Attached Files:

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  17. Delia

    Delia Senior Member

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    I sent a letter of endorsement for Chris' letter as well.
    justinreilly likes this.
  18. Keela Too

    Keela Too Senior Member

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    Below is a copy of my letter (also at http://sallyjustme.blogspot.co.uk/ ) I intend to send it shortly. I thought about endorsing several other letters at the end, but decided in the end to just mention Justin's letter re specifics on individual panelists.

    Last edited: Dec 23, 2013
  19. Ember

    Ember Senior Member

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    You may have missed this study, Chris.
  20. Ember

    Ember Senior Member

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    HHS has gone protectionist, Justin. The IOM won't be producing an international definition.

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