arrow8 Comments
  1. John
    Apr 08 - 1:11 pm


    I did not realize you had to pre-register to view the meeting webinar so I’m in!

    • Cort Johnson
      Apr 08 - 1:34 pm

      I didn’t either until today actually (!)…

  2. Readyforlife
    Apr 08 - 2:09 pm

    Thank you for keeping this on your home page and up front to keep reminding people. And great job with the pop up idea to keep everyone reminded to comment. I’m really sick at the moment but I forced myself to write something just so I could be heard. It might not be a intellegent comment but at least I know i’m being counted for. Only 126 comments as of this morning and we have millions of sick people in our community. There should be thousand of comments. I will say they didn’t make the form easy for us. I walked away from it a few times because I didn’t know what to put for organizations name or category. Figured it out by reading others comments about it.

    Thanks Cort

    • Cort Johnson
      Apr 08 - 2:14 pm

      Thanks “Readyforlife’ (love the tag)…I like that popup too..Thanks for ploughing through the illness and getting your comments in….I’ve got to do that this afternoon. :)

  3. Ron Lopez
    Apr 08 - 4:33 pm


    Wow, I did not know there were two surveys circulating for the same FDA meeting! I just completed the 2nd Chu/Jason FDA survey. Boy am I glad I did. I thought it was done quite well and very thorough. It was very direct, to the point, and gave plenty of space to add extra notes. Much better overall then the first survey I took. But all together should have a clear picture and hopefully a solid impact on the FDA panel.

    Thanks Cort for keeping us abreast and in such a timely manner! You are definitely on top of things and are much appreciated!

    • Cort Johnson
      Apr 08 - 5:46 pm

      Thanks Ron. I love Lily Chu’s survey! It deserves a wide audience.

  4. Toby
    Apr 08 - 4:58 pm

    Thanks Cort! I re-posted in various groups and pages. Hopefully the community will let its voice be heard. If not us then who? This is definitely one where we need to rise to the occasion.

  5. Lucy Parker
    Apr 09 - 4:23 am

    I have experienced ME/CFS for 18 years now. It just took me about two minutes to add that up. I was Very Severely effected in the year of 1998 where I could not function and received no support. Then another five years alone relearning how to talk, socialise and regain some abilities. I still have not recovered half my previous skills and am unable to work even now. If early diagnosis and support had been there the story may be different. I don’t want to trouble you with the horror experienced so will just leave you with well wishes for you and your family.

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