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  1. ahimsa

    BBC Radio York, Jonathan Cowap, 45 min segment on ME

    Since I haven't seen anyone from the USA post a comment I thought I'd say that this link worked for me. I only listened to a few minutes. I often have trouble absorbing information in audio format so I probably won't listen to the whole program.
  2. ahimsa

    Gastroparesis, post-prandial pain, eating difficulties

    I don't think I have this problem (a few minor stomach and intestinal problems but very minor compared to the symptoms that are disabling). But I saw this information from Dysautonomia International so thought I'd pass it on: https://twitter.com/Dysautonomia/status/984512915645632512 For...
  3. ahimsa

    Mike's EU Marathons

    :balloons: Bravo, and thank you, @Mike Harley ! :trophy@ Every time I see a photo of you holding up that banner it puts a big smile on my face! :D
  4. ahimsa

    Participate in the 2018 #MillionsMissing with #MEACTION

    The MEAction website has info on how to set up or participate in #MillionsMissing protests on May 12, 2018. https://millionsmissing.meaction.net/get-started/
  5. ahimsa

    SMCI Monthly Update Thread - March 2018

    This looks great and I appreciate all the work being put into planning ME/CFS Advocacy Day! I won't be able to travel to Washington, DC. But I'm looking forward to participating in other forms of activism on May 12th. :)
  6. ahimsa

    CNN: She couldn't march, so she made a 15-piece sign... (mentions a patient with ME/CFS)

    For those on twitter: https://twitter.com/RogueMamma/status/977782262379962368
  7. ahimsa

    CNN: She couldn't march, so she made a 15-piece sign... (mentions a patient with ME/CFS)

    This CNN article profiles several people who were unable to march (for many different reasons) in Saturday's "March for Our Lives" protest but who supported the movement in other ways. The second profile in the article is about someone with ME/CFS. I'm thrilled that this CNN article...
  8. ahimsa

    The Mighty: How My Life Has Changed Since I Developed ME/CFS

    What I always find missing from these kind of pieces about learning how to live with ME is that they so often completely omit financial issues. I know that these are complicated issues, and few folks want to read details about SSDI vs SSI (benefits programs in the USA). But the issue of how...
  9. ahimsa

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Whoa! Considering that some studies have shown low blood volume, how did you have any blood left in you after all that? ;) But seriously, thanks for sharing the photo! :)
  10. ahimsa

    Let's talk wheelchairs and mobility scooters

    There's also a new app that I read about that rates accessibility: https://www.thelily.com/a-yelp-for-accessibility-the-app-thats-trying-to-change-the-conversation-about-disability/ https://www.facebook.com/AccessNowApp/ https://www.facebook.com/AccessNowApp/ I have no personal experience with...
  11. ahimsa

    Unrest - reviews and general articles

    @Arnie Pye I used google to search for EEG photos and quickly found this page with a similar photo: https://thelizarmy.com/2011/02/from-beginning-to-end-this-was-my-eeg-experience/ Of course, her photo is not in the same league as Jen's when it comes to the quality of photo (composition...
  12. ahimsa

    Unrest - reviews and general articles

    I got the impression that she was planning to make films on other topics. But I could be wrong.
  13. ahimsa

    does anyone get these symptoms? (mainly skin-based!)

    I think what you're describing here is a symptom I've had since the very beginning (illness onset in 1990). I get these small muscle twitches all over. Often they are on muscles that are not under clothing, and can be seen (arms, face), so that's why one of my doctors saw them and told me they...
  14. ahimsa

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    For folks on twitter, here's a link to a tweet by @Tom Kindlon that you can re-tweet to spread the word:
  15. ahimsa

    How many hours of sleep a night do you need? - Now with Poll

    I'm not sure how much sleep I need ;) but I get between 7-8 hours with lots of awakenings (see https://www.s4me.info/threads/sleep-poll-do-you-experience-insomnia-or-somnolence-with-your-me.2750/page-2#post-51614 ) I do spend a lot of time resting. I lie with my feet up (in my recliner) most of...
  16. ahimsa

    Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis (2018) Evans & Jason

    This is pretty close to my own onset pattern. Really bad flu-like illness in late December 1989. Then I thought I was recovered and went back to work after the new year. Sometime in January 1990 I started getting dizziness, lightheadedness, feeling out of breath. Over a period of 3-4 weeks I...
  17. ahimsa

    Seeking An Elusive Cure - article on Maureen Hanson and her Collaborative Research Center

    Thanks for posting that link, Andy. This is one of those fairly short articles that I find helpful to share with friends/family who know very little about ME. I liked the parenthetical comment (which I've bolded) the author added about about PEM: There's also a nice quote from Carol Head from...
  18. ahimsa

    Oscar nominations now being announced - will Unrest be among them?

    For @Little Bluestem (and anyone else who couldn't view the poem using the twitter link) here's a youtube version that might work. Video is only 1 minute long. Jen is shown at about 0:35.
  19. ahimsa

    Telebriefing by Trans-NIH ME/CFS Working Group on March 7, 3-4 PM Eastern Time

    I got some email today from the The Trans-NIH ME/CFS Working Group. (I guess I signed up for their mailing list but had forgotten all about it) ===== start of mail ===== We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The...
  20. ahimsa

    Tues 20 Feb: Livestream of post-Unrest panel discussion, incl. Ron Davis, Lily Chu, Montoya, Tuller

    Bumping this thread ... not sure if I'll watch but some might be interested. Thanks to @MErmaid for including the information in the previous post.
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