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  1. ahimsa

    USA: News from #MEAction

    #MEAction’s BOLD Press Strategy Leads to BIG Press Payoff! by Adriane Tillman https://www.meaction.net/2022/11/03/bold-press-strategy-bold-press-payoff/
  2. ahimsa

    Long Covid in the media and social media 2022

    Merged post Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS? https://medicine.yale.edu/news-article/will-long-covid-research-provide-answers-for-poorly-understood-ailments-like-chronic-fatigue/
  3. ahimsa

    “Patients Helping Patients”. A 3-part living with ME course now available on YouTube

    I also have not watched, so no comment on content, but here's a link to slides that go with the video. Oddly, even though this is a google doc that's posted online, without any password or other restriction, all the pages are marked with this statement: "This courtesy handout is for your...
  4. ahimsa

    Well-known, famous people with Covid-19 and Long Covid

    The US CDC director, Dr. Rochelle Walensky, has tested positive for COVID-19. This is the same person who downplayed masks and air filtration as preventative measures (once compared mask wearing to the "scarlet letter"). I would not wish COVID (or any other illness) on anyone! I hope no one...
  5. ahimsa

    Long Covid in the media and social media 2022

    In Cleveland and beyond researchers begin to unravel the mystery of long COVID-19 https://www.cleveland.com/news/2022/10/in-cleveland-and-beyond-researchers-begin-to-unravel-the-mystery-of-long-covid-19.html I've not had time to read this, just skimmed it, but didn't see any mention of ME/cfs.
  6. ahimsa

    Long Covid in the media and social media 2022

    Personal essay on CNN website: Opinion: Doctors didn’t believe that I had Covid-19. I found a way to make them listen Opinion by Chimére L. Smith https://www.cnn.com/2022/10/17/opinions/long-covid-health-care-smith/index.html
  7. ahimsa

    Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gaglio … Jason, 2022

    My cognitive problems don't disappear when lying down, but I have often joked that my IQ goes up 30-40 points when I'm lying down. And my husband knows better than to ask me a question while I'm standing up. I always have to sit down first. I guess I've never posted these kinds of comments...
  8. ahimsa

    Distinguishing features of Long COVID identified through immune profiling, 2022, Klein, Iwasaki et al

    Thanks, @Hutan! I appreciate folks who are able to analyze and make comments on posts about research. It's not something I'm able to do. I can't answer that question, but here's her twitter profile, which has a link to her youtube channel. https://twitter.com/GertrudRey And here's a list...
  9. ahimsa

    Distinguishing features of Long COVID identified through immune profiling, 2022, Klein, Iwasaki et al

    Why do Some People Develop Long COVID? 6 October 2022 by Gertrud U. Rey https://www.virology.ws/2022/10/06/what-causes-long-covid/
  10. ahimsa

    Long Covid in the media and social media 2022

    Here's a slightly longer news article about that CDC survey of Long Covid patients. https://www.axios.com/2022/10/06/long-covid-cdc-data-disabling Mentions "chronic fatigue syndrome" (not ME/CFS) and then uses "chronic fatigue" just a few lines later :banghead: An excerpt:
  11. ahimsa

    Covid-19 vaccination experiences

    Got my latest COVID booster on Tuesday, Sept. 27. In addition to the sore arm I had a few days of body aches (took max dose of ibuprofen) and feeling more crap than usual, lots more exhaustion. But no fever. And no nausea, thank goodness! (side effect that I got from Shingles vaccine) So I...
  12. ahimsa

    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    I think caretaker is a more old fashioned word and the language has shifted to caregiver, which I agree is a better word. But some people do still use the word caretaker. I just googled and found some recent instances.
  13. ahimsa

    The Atlantic - Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases - by Ed Yong

    Senator Ed Markey (Massachusetts) quote tweeted this article today, adding: "ME/CFS was America's hidden health crisis long before the pandemic. Now, COVID long haulers are experiencing its debilitating effects. That's why I'm pushing for $27 million to study the intersection of COVID and...
  14. ahimsa

    Fear conditioning as a pathogenic mechanism in the postural tachycardia syndrome, Norcliffe-Kaufmann et al, 2022

    I've seen other studies that use LBNP (lower body negative pressure) testing. This video on Vimeo - Understanding Blood Volume and Hemodynamics in POTS, by Satish Raj - mentions a study that uses it: Here's a screen shot showing what the machine looks like: EDIT: This study showed...
  15. ahimsa

    San Francisco Chronicle (opinion): Biden says the COVID pandemic is over. He could have fooled me

    Not sure of the date for those numbers but the current number of daily deaths in the USA is higher than that. @shak8 posted a range of of 425-450 daily which seems about right. I just looked at the Johns Hopkins Coronavirus Resource Center and the 7 day average, as of Sept. 23, is 494 deaths...
  16. ahimsa

    San Francisco Chronicle (opinion): Biden says the COVID pandemic is over. He could have fooled me

    Not sure exactly where to post this article since it covers a lot of things! This forum seemed best because of the title (pandemic), but please move if there's a better place. Perhaps the forum for Long Covid news? This article is a response to Biden's statement on 60 Minutes that the pandemic...
  17. ahimsa

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

    I think this article has been posted on another thread (not sure). I'm adding it here because it mentions the #MEAction protests. How ME/CFS Research Can Provide New Insights Into Long COVID...
  18. ahimsa

    Hair loss and changes to fingernails

    I also had hair loss in my first year of illness. But it was more of large amount of hair shedding all at once rather than permanent hair loss. My hairdresser pointed out a lot of new hair growth when I went in for a haircut some time later on (weeks? months? don't remember).
  19. ahimsa

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

    Here's the #MEAction article about news coverage for the protest: https://www.meaction.net/2022/09/20/millionsmissing-press-hits-rolling-in/
  20. ahimsa

    USA: News from #MEAction

    #MEAction & Mayo win Grant for Diagnostic Improvement https://www.meaction.net/2022/09/22/mayo-grant/ Announcement on twitter:
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