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  1. ahimsa
    Post

    Building an evidence base for management of severe ME (including sleep management)

    Agreed. I think subjective measures of pain, nausea, dizziness and so on are just as important as objective measures of activity or tasks...
    Post by: ahimsa, May 17, 2019 in forum: ME/CFS research
  2. ahimsa
    Post

    Building an evidence base for management of severe ME (including sleep management)

    I may be misunderstanding something. Does the "we" in this sentence mean ME/CFS patients? Can you help me understand the need for elevated heart...
    Post by: ahimsa, May 16, 2019 in forum: ME/CFS research
  3. ahimsa
    Post

    May 2019 - Awareness Week including Millions Missing

    For a small event it went well! I'm not sure whether we actually educated many new folks about ME. I did hand out a fair number of bookmarks but...
    Post by: ahimsa, May 14, 2019 in forum: Advocacy Projects and Campaigns
  4. ahimsa
    Post

    May 2019 - Awareness Week including Millions Missing

    Merged Open Medicine Foundation (OMF) posted this video on twitter, a slideshow of the photos displayed in Times Square on May 12th: [MEDIA]
    Post by: ahimsa, May 14, 2019 in forum: Advocacy Projects and Campaigns
  5. ahimsa
    Post

    Michael VanElzakker

    Michael VanElzakker is on twitter. He posted this just yesterday: https://twitter.com/MBVanElzakker/status/1126663767587262467 [MEDIA] PS. His...
    Post by: ahimsa, May 10, 2019 in forum: ME/CFS research news
  6. ahimsa
    Post

    Need help with poster for Millions Missing event

    Thanks for all the ideas! I'm definitely leaning toward wording that stresses the idea, "Tomorrow it could be you!"
    Post by: ahimsa, May 10, 2019 in forum: Advocacy Projects and Campaigns
  7. ahimsa
    Post

    Patient ME Research Donations - links please.

    Hi folks, I went to this page just now and the OMF link was wrong. I clicked a few of the other links, and they seemed okay, but I don't know for...
    Post by: ahimsa, May 10, 2019 in forum: Fundraising
  8. ahimsa
    Post

    Need help with poster for Millions Missing event

    So true! I tried to get at that idea when I said, "... what would draw people walking into the library over to our table? Any ideas?" I do...
    Post by: ahimsa, May 9, 2019 in forum: Advocacy Projects and Campaigns
  9. ahimsa
    Post

    Need help with poster for Millions Missing event

    Thanks for all the ideas .... keep them coming! :heart: I like the idea of being a little bit vague on the poster - lure them in closer so they...
    Post by: ahimsa, May 9, 2019 in forum: Advocacy Projects and Campaigns
  10. ahimsa
    Thread

    Need help with poster for Millions Missing event

    Hi, I have everything ready for the Sunday Millions Missing event except one item. I want to create a poster to put up near our table. I ended...
    Thread by: ahimsa, May 8, 2019, 14 replies, in forum: Advocacy Projects and Campaigns
  11. ahimsa
    Post

    Anyone with sudden and violent stomach cramps ?

    I get stomach cramps randomly. And I mean stomach - much higher up - not intestinal cramps, as far as I can tell. My stomach cramps are not as...
    Post by: ahimsa, May 8, 2019 in forum: Pain and Inflammation
  12. ahimsa
    Post

    Need some input for a #MillionsMissing event in Beaverton, OR

    Bookmarks have arrived! :D (a bit early, I thought they'd be here on Monday) I think they turned out pretty good. Here's what they look like:...
    Post by: ahimsa, May 5, 2019 in forum: Advocacy Projects and Campaigns
  13. ahimsa
    Post

    Betsy Keller in NIH Accelerating Research on ME/CFS meeting

    Does a patient have to have low resting blood pressure to have some form of autonomic dysfunction? I don't think so but I could be mistaken. Or...
    Post by: ahimsa, May 2, 2019 in forum: General ME/CFS news
  14. ahimsa
    Post

    Betsy Keller in NIH Accelerating Research on ME/CFS meeting

    That was an interesting presentation. Thanks for sharing the link, @MeSci :) There were a lot of good slides, too many to include here. But...
    Post by: ahimsa, May 2, 2019 in forum: General ME/CFS news
  15. ahimsa
    Post

    MS society question people on the streets to ask what they know about MS

    Hi @Cinders66 - I just wanted to let you know that the hashtag is #MillionsMissing not #MissingMillions. Sorry I don't have any input on the...
    Post by: ahimsa, May 2, 2019 in forum: General disability topics and advocacy
  16. ahimsa
    Post

    Need some input for a #MillionsMissing event in Beaverton, OR

    I just checked the announcement on the ME Action website and 2 attendees have already RSVPed! Hooray! :)...
    Post by: ahimsa, May 2, 2019 in forum: Advocacy Projects and Campaigns
  17. ahimsa
    Post

    Need some input for a #MillionsMissing event in Beaverton, OR

    Well, I put in an order for bookmarks today. I sure hope they turn out okay. :nailbiting: I know the design is not all that great but I do hope...
    Post by: ahimsa, May 2, 2019 in forum: Advocacy Projects and Campaigns
  18. ahimsa
    Post

    Orthostatic intolerance

    Thanks for your answer. :) I had the impression that the tilt table test was pretty mainstream test used by cardiologists...
    Post by: ahimsa, May 1, 2019 in forum: Cardiovascular and exercise physiology (CPET)
  19. ahimsa
    Post

    Orthostatic intolerance

    I tried hard to explicitly exclude ME patients in my original question. (i.e., "I'm not talking about testing for ME patients but just in...
    Post by: ahimsa, May 1, 2019 in forum: Cardiovascular and exercise physiology (CPET)
  20. ahimsa
    Post

    Orthostatic intolerance

    Not if patients don't even know that standing still might be contributing to certain symptoms. I admit that I was clueless. It never occurred to...
    Post by: ahimsa, Apr 30, 2019 in forum: Cardiovascular and exercise physiology (CPET)
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