Deadlines and Opportunities

There are a number of opportunities for ME/CFS advocacy right now – all of which you can do on your own from home! Here are the details:

CFS Advisory Committee Public Comment: The Federal Register notice for the August 18-19th meeting has been published.

  • Registration to attend in person is different this time! You must download a form on the CFSAC website (although it’s not available yet) and email it to Registration for attendance closes August 13th.
  • Public comment registration is required to comment in person or by phone. Request a slot by emailing Comments are limited to three minutes in length, and registration closes August 10th.
  • Written public comment can be submitted, whether you have a speaking slot or not. Comments should be no longer than 5 single spaced pages using 12pt font, and should be in MS Word format. Email your comments to by August 13th for inclusion in the public record.

NIH Strategic Plan: Public comment is due August 16th. I‘ve posted details about the plan and my own comments.

Key States Targeted for NIH Funding Petition: MEAction is looking for advocates in twenty-two key states to participate in targeted advocacy with Congress. Even if you don’t live in one of those states, you can still sign the petition.

I expect more advocacy actions will be launched in the near future, so stay tuned.

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6 Responses to Deadlines and Opportunities

  1. babs says:

    Your comments to NIH are great. You may want to tell readers that they can submit a comment simply stating that they support your comment and incorporate it by reference.

    • Jennie Spotila says:

      Thank you, Babs! In the case of the NIH comments, I am not sure comments that incorporate mine by reference will be particularly helpful. NIH may receive thousands of comments on the strategic plan, since it is important to so many stakeholders, and I don’t think staff will take the time to look up comments referenced by people. It might be better to submit a few sentences that capture whatever you believe is most important. Staff may count the number of times certain themes emerge, so comments saying similar things could be very helpful.

      • Babs says:

        After I wrote my comment, I saw that incorporating your comments would in fact be difficult. I cut & pasted your work and added some stuff as well. NIH did not make the comment process user – friendly!

  2. Denise says:

    The forms have finally been posted (on 3 August 2015).

    The registration form for US citizens can be found here:

    Non US citizens must fill out an additional form
    BUT the deadline for submitting that form was 1 August 2015 which was 2 days before the form was posted.

  3. Anne Ö says:

    Thank you, Jennie, for all you do. It’s so important to so many of us. Hopefully many others will pitch in!

  4. John says:

    We the tax payers have to go to a fortified building where these dirtbags can hide! They know if they weren’t constantly protected because their inhumanity might warrant what they deserve……it’s really pathetic and you reap what you sow….

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