International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

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


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

    Read entire blog here.
    Wayne, Ember and Gemini like this.
  2. Gemini

    Gemini Senior Member

    East Coast USA
    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:

    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.
    Nielk likes this.
  3. Wally

    Wally Senior Member

    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.

    Last edited: Jan 31, 2018
    Nielk likes this.

See more popular forum discussions.

Share This Page