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  1. ahimsa

    Long Covid in the media and social media 2022

    Time Magazine - Why You Should Rest—a Lot—If You Have COVID-19 https://time.com/6215346/covid-19-rest-helps/ That last sentence in the quote -- saying that people with ME/CFS "prefer" pacing to GET -- is very strange. It feels like "both sides" reporting, positioning both treatments as...
  2. ahimsa

    Neurovascular Dysregulation and Acute Exercise Intolerance in ME/CFS: A Randomized, Placebo-Controlled Trial of Pyridostigmine, 2022, Systrom et al

    OMF posted this link on twitter today: https://www.omf.ngo/wp-content/uploads/2022/09/mest-rct.pdf The tweet said "new publication" but I think it's the paper mentioned in the first post. Can someone confirm? Thanks!
  3. ahimsa

    Long Covid in the media and social media 2022

    New article in Teen Vogue by Fiona Lowenstein What Long COVID Is Like For These 14 People https://www.teenvogue.com/story/what-long-covid-is-like-for-these-8-people
  4. ahimsa

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    I think any discussion of how to determine the shift from pandemic to endemic probably belongs in a different thread. However, I do think it's worth talking about why Biden's statement was relevant for the MEAction protest at the White House. It was mentioned earlier that simply by being in...
  5. ahimsa

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    [Note: "The Hill" is the name of this media outlet. It's also a nickname for Capitol Hill in Washington, DC.] Protesters rip Biden on COVID: ‘Pandemic is not over’ https://thehill.com/policy/healthcare/3651109-protesters-rip-biden-on-covid-pandemic-is-not-over/
  6. ahimsa

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    Yes, it was good that by reacting to this quote the #MEAction protest got coverage that it might have missed! Making lemonade out of lemons.
  7. ahimsa

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    [Note: I posted this here because of the mention of the #MEAction protest - Millions Missing 2022 - that happened at the White House today, Sept. 19. But feel free to move to another section if you think it doesn't fit here.] Biden Says the Pandemic Is Over. But at Least 400 People Are Dying...
  8. ahimsa

    USA: 2022 Sep 19: Long COVID, ME/CFS Patients Protest in Front of White House

    Threads about different articles have been merged Article about today's protest at the White House from MedPage Today: "Long COVID, ME/CFS Patients Protest in Front of White House" https://www.medpagetoday.com/infectiousdisease/longcovid/100806 There was also a mention of the protest, and...
  9. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    Final reminder - even if you can't do anything to participate or support this protest, that's okay. Tweet from MEAction: EDIT: changed link to a screen shot to make it easier to see the tweet
  10. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    There are now two links that you can use to support the USA protest. This link sends an email to President Biden: https://act.meaction.net/page/44417/action/1 There's a form to fill out which requires your name, mailing address, email, and phone. These fields are required by the White House...
  11. ahimsa

    Cognitive-communication difficulties in adults with Long COVID, 2023, Cummings (has ME/CFS control group)

    Interesting. I searched on twitter and found this webinar scheduled for November 22: https://ealthy.com/product/cognitive-linguistic-difficulties-in-adults-with-long-covid/
  12. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    The Sept. 11 online training meeting didn't get recorded due to some sort of technical problem. However, MEAction has posted a video of the social media manager, Holly Latham, going through the Millions Missing 2022 Activism From Home Toolkit (a google docs file)-
  13. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    Interesting coincidence. This article from NPR, about the problems with SSI, was just published today. High rents outpace federal disability payments, leaving many homeless https://www.npr.org/sections/health-shots/2022/09/15/1121848289/social-security-disability-inflation-poverty
  14. ahimsa

    USA: News from #MEAction

    Merged thread Why I'm Getting Arrested on Monday at the White House, and How You Can Help (Millions Missing protest in Washington, DC) https://thecrankyqueer.substack.com/p/why-im-getting-arrested-on-monday
  15. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    Thank you, @Laurie P :) That article explains the situation quite well. To add another item that's related to financial support for disabled patients, one of the things mentioned in the training meeting on Sept. 11 (which I just remembered!) is the "Stop The Wait" Act. See...
  16. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    I remembered one point from the Sept. 11 meeting that I want to share. When considering the algorithms used by social media (twitter, facebook, instagram, etc) those posts with unique content do better than repeated content. So the organizers recommend posting new photos rather than just...
  17. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    Tweet sent by MEAction (USA) yesterday: "One week away! More info on how to take action from home coming your way tomorrow!" EDIT: Deleted some duplicate text (cut and paste error)
  18. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    This is a short summary of the Sept. 11 online training meeting about at home actions. These actions are meant to support the in-person protest to be held in Washington, DC, on Sept. 19. I believe this slide presentation shown at the meeting, or some other format with the same information, will...
  19. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    The UK protest in London was scheduled for a different date, Tuesday, Sept 13. That London protest has been cancelled according to this tweet from MEAction UK: The USA in-person protest in Washington, DC, is the one scheduled for Monday, Sept 19. The Sept. 19 protest in Washington, DC, has...
  20. ahimsa

    USA - 2022 Millions Missing protest: Online training session for those taking action from home

    FYI, I plan to attend the session and will report back what I learn.
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