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MEadvocacy's Comment To NINDS/CDC CDEs Draft & See What You Can Do

Discussion in 'Action Alerts and Advocacy' started by Nielk, Jan 31, 2018.

  1. Nielk

    Nielk

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    Read MEadvocacy's comment to NINDS/CDC CDE draft and see what you can do.

    Read entire blog here.
     
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  2. Gemini

    Gemini Senior Member

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    Thanks for posting MEadvocacy's Public Comment, @Nielk. I used the link in my Comment as follows:

    I commend the sponsors of the ME/CFS CDE Project and efforts of those who produced the Draft under review.

    To improve the effectiveness of this worthwhile Project, I support MEadvocacy's recommendations: http://www.meadvocacy.org/meadvocacy_s_comment_to_ninds_cdc_cdes_draft_see_what_you_can_do

    Regards the need for new questionnaires designed specifically for ME, the "objective" evidence collected and recorded by ME experts and clinicians over the past three decades should be included in the CDE Project. It along with the Biomarkers Subgroup's important recommendation to study ME patients with co-morbid illnesses will guide ME subgrouping and personalized treatment research.

    I look forward to reviewing future ME/CFS CDE Drafts.
     
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  3. Wally

    Wally Senior Member

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    Thank you @Nielk for posting this information.

    I had tried to get a group advocacy project going here at Phoenix Rising to write up a sample comment for members to review, but I came down with a second bout of the flu and I have been M.I.A. until receiving an alert this afternoon about today’s initial deadline for commenting on the CDE’s.

    (My apologies to those who signed up to work on this project that did not hear what had happened to me on following thru to get this project complete. The message (conversation), I thought I had sent out to you that I was sick with the flu appears to have not gone out. )

    Note - I have cut and pasted the information in the ME Advocacy blog and informed the NIH that I am adopting the comments in the blog in their entirety and I would like my comment to be added to their list of public comments received in response to their Draft ME/CFS Common Data Elements.

    The initial deadline for comments was set for 5:00 pm (EST) today, January 31, 2018, but as pointed out in ME Advocacy’s blog, public comments will be accepted after January 31st.

    .
    See, http://www.meadvocacy.org/meadvocacy_s_comment_to_ninds_cdc_cdes_draft_see_what_you_can_do
     
    Last edited: Jan 31, 2018
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