Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Responses to individual points in the P2P report

Discussion in 'Advocacy Projects' started by Sasha, Dec 28, 2014.

  1. Bob

    Bob

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    Perhaps another comparison could be Parkinson's disease and "Chronic Shaking Syndrome" - which would be equally stupid to 'CFS'.
     
    Last edited: Jan 4, 2015
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  2. Wally

    Wally Senior Member

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    @Sasha,
    I thought that this thread had a reference to the outstanding question to the ODP regarding retention of Public Comments to the draft report, but I may have been mistaken. Anyhow, since this thread relates to Public Comments for the Draft Report I am referencing a posting I have made in the "P2P Report Is Out" thread with an update on a conversation I had with the ODP (Paris Watson) this morning in regards to retention of any Public Comments submitted for the Draft Report or the two day P2P Workshop that took place in December. Here is a link to the posting regarding that conversation. See, Reply #558 at http://forums.phoenixrising.me/index.php?threads/the-p2p-draft-report-is-out.34480/page-28
     
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  3. Anne

    Anne Senior Member

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    SUPER-IMPORTANT QUESTION:

    Are there two different versions of the Draft Report around? I have different line numbers than you, @Sasha!

    In the Draft Report in this link:
    https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

    the line numbers are the same for your first two quotes, but the other three I find on lines 275- 276, 348-350 and 370-371!

    Very worrying - what has happened here? Do I have an old version?
     
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  4. Sasha

    Sasha Fine, thank you

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    That's weird - I've double checked and my line numbers are correct (at least for the version of the document that I've printed off).

    Can they possibly have put out two versions?!
     
  5. Anne

    Anne Senior Member

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    According to Jennie Spotila they HAVE put two versions out. She says she's onto it - watch Occupy CFS.

    As if we needed this.... :-(
     
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  6. Anne

    Anne Senior Member

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    Sasha, if you open the link, do you get my version or your version on the screen?
     
  7. Sasha

    Sasha Fine, thank you

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    I get your version.
     
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  8. Bob

    Bob

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    Last edited: Jan 6, 2015
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  9. jspotila

    jspotila Senior Member

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    There are two versions. ODP says it is aware of the problem (which is good since they are the ones responsible for creating the problem). They have alerted the Panel which is devising a system to make sure they assign people's comments to the correct lines.

    I will have more on this tomorrow, or as soon as my brain cooperates. As an interim suggestion, you may want to note at the beginning of your comments that you are using the 403 line version or the 389 line version. There are no text differences between the two versions (I checked).
     
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  10. Sean

    Sean Senior Member

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    Different line numbering. Just what we need, with a deadline approaching. :mad:

    So, there are now two versions, a 19 page 403 line version (the original?), and a 25 page 389 line version (the updated?).

    As far as I can tell the both came from the same link, meaning the document on the end of that link has been changed.

    https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

    I have been using the 19 page 403 line version, and that is what my plain text file is based on.

    P2P Draft Executive Summary - plain text version.txt
     
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  11. Sean

    Sean Senior Member

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    Also, the MEA page on this is now out of date. It says

    Can somebody with a connection to the MEA let them know about the two different versions.

    Ta.
     
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  12. Bob

    Bob

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    I've just sent an email.
     
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  13. Sing

    Sing Senior Member

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    cfsac@hhs.gov

    Cort Johnson's Blog recommends sending in your copy to CFSAC above by tomorrow, Jan 7, to be considered during their conference call on P2P which will happen on Jan 13, 1-3 pm.
     
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  14. jspotila

    jspotila Senior Member

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    It's pretty ridiculous. Today's blog post will offer a work around to ensure comments are understood. And to be honest, there will be a healthy dose of editorializing too.
     
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  15. jspotila

    jspotila Senior Member

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  16. Sing

    Sing Senior Member

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    I sent in my critique to cfsac, nih and jspotila :redface: who, as you will see if you read her blog post, will be archiving our comments for future reference.:thumbsup:
     
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  17. Denise

    Denise Senior Member

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    Info re sending comments to JSpotila for archiving:
    http://www.occupycfs.com/p2p-library/
     
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  18. Sean

    Sean Senior Member

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    The draft of the rest of my comments, except for on Lines 326-27, and 357-58. Still looking at those.

    Also haven't added a comment about the Oxford criteria yet.

    Did it as an attachment (in plain text), so it doesn't clutter up the thread with bulk text.
     

    Attached Files:

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  19. Anne

    Anne Senior Member

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    Thank you, Sasha, for all of your posts in this thread, extremely helpful.

    A question: Can you help me clarify how we got to the figure of $287 million. Is it the amount of dollars per patient spent on MS patients, multiplied with the 1 million ME patients in the States?
     
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  20. Sasha

    Sasha Fine, thank you

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    $115m per 4 people = $28.7m per person.

    If you have 10 people, you need 10 x $28.7m = $287m.

    Hope that helps! Yes, it's the amount per patient spend on PWMS, scaled up to the PWME population.
     
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