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#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/

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/

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...

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...

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.

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

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...

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...

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/

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:

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...

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.

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...

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...

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...

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...

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...

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).

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

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