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  1. ChloeC
    Post

    A proposal for ME Action: a commitment to evidence-based medicine

    Thank you to everyone for your thoughtful comments, and especially @Jonathan Edwards for explaining what you meant. Your response makes much more...
    Post by: ChloeC, Nov 22, 2019 in forum: General Advocacy Discussions
  2. ChloeC
    Post

    A proposal for ME Action: a commitment to evidence-based medicine

    This comment makes no sense to me. #MEAction does not conduct or fund research. My understanding is that this proposal concerned how #MEAction...
    Post by: ChloeC, Nov 22, 2019 in forum: General Advocacy Discussions
  3. ChloeC
    Post

    Science minded people--help me engineer a simple structure to stay warm?

    I saw a post recently in an ME Facebook group (can't remember which) with a lot of recommendations for layering clothing and footwear to keep warm...
    Post by: ChloeC, Nov 22, 2019 in forum: Home adaptations, mobility and personal care
  4. ChloeC
    Post

    #MEAction: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

    Absolutely! There's no time limit. The videos that have been shared are so powerful--it would be awesome to keep having more come out over the...
    Post by: ChloeC, Nov 22, 2019 in forum: Advocacy Action Alerts
  5. ChloeC
    Post

    #MEAction: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

    Sorry, just seeing your tag, @debored13 . Your plan sounds awesome! Not too aggressive. Just make sure to be super careful so you don't get hurt.
    Post by: ChloeC, Nov 21, 2019 in forum: Advocacy Action Alerts
  6. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    Correction: You can continue to sign up using the registration form link in the previous post! Even though the meeting already happened, if you'd...
    Post by: ChloeC, Nov 14, 2019 in forum: Petitions
  7. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    Gah, forgot to post this earlier, sorry! Call starts in 1 hour! If you haven't heard, #MEAction is having a "closed-door" community call at 3p ET...
    Post by: ChloeC, Nov 12, 2019 in forum: Petitions
  8. ChloeC
    Post

    Should ME organisations do more direct action to get more funding for ME research?

    Really glad to see this discussion going. I think it's a super important topic and have been meaning to weigh in for a while, but have so much to...
    Post by: ChloeC, Nov 12, 2019 in forum: General Advocacy Discussions
  9. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    Re: sharing: YouTube has a Share button that lets you send the video by email or messaging (eg WhatsApp) and post it directly to Facebook or...
    Post by: ChloeC, Oct 30, 2019 in forum: Petitions
  10. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    I think it's awesome! They did a great job. It's perfect for sharing with folks outside the ME community, to build broad understanding and support...
    Post by: ChloeC, Oct 29, 2019 in forum: Petitions
  11. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    Wanted to add that you can share the #NotEnough4ME NIH petition with just 2 clicks if you have a Twitter or Facebook account! Near the bottom of...
    Post by: ChloeC, Oct 29, 2019 in forum: Petitions
  12. ChloeC
    Post

    USA:NANDSC Working Group for ME/CFS Research report, September 2019

    #MEAction recently released it's formal response to the NANDSC WG Report. It's an extremely thorough and detailed critique of the plan's utter...
    Post by: ChloeC, Oct 28, 2019 in forum: General ME/CFS news
  13. ChloeC
    Post

    ME Action petition to Walter Koroshetz

    Bumping this as the number of signatures has stalled out in the low 3,000s. Make sure to sign ASAP if you haven't yet! The #NotEnough4ME campaign...
    Post by: ChloeC, Oct 28, 2019 in forum: Petitions
  14. ChloeC
    Post

    MEAction: Join Our Values and Policy Initiative! September 2019

    I think legal action could be a very valuable component of ME activism in general and of the current #MEAction #NotEnough4ME campaign...
    Post by: ChloeC, Oct 28, 2019 in forum: Advocacy Projects and Campaigns
  15. ChloeC
    Post

    Blog: 'Summary so far of "Something in the blood"' by Simon McGrath

    I think that is indeed what Prusty was suggesting-- that a very small number of cells was infected (not enough to create a significant difference...
    Post by: ChloeC, Apr 25, 2019 in forum: General ME/CFS news
  16. ChloeC
    Post

    Blog: 'Summary so far of "Something in the blood"' by Simon McGrath

    I decided to just go ahead and email SMCI / Sadie Whitaker about this, since she fits both categories and has lots of experience in the...
    Post by: ChloeC, Apr 20, 2019 in forum: General ME/CFS news
  17. ChloeC
    Post

    Blog: 'Summary so far of "Something in the blood"' by Simon McGrath

    This mission sounds tailor-made for ME/CFS research into a biomarker! Someone with scientific credibility and/or advocacy group backing should...
    Post by: ChloeC, Apr 20, 2019 in forum: General ME/CFS news
  18. ChloeC
    Post

    News from NIH: ME/CFS Telebriefing- April 9, 2019

    Bump--this is happening today! Per @Denise 's post, many advocates, activists, researchers, etc may not be able to join this call, so please call...
    Post by: ChloeC, Apr 9, 2019 in forum: General ME/CFS news
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