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Thanks for starting this thread, @Blueskytoo ! A study that collected data on ME patients using these trackers would be interesting.

Thanks for posting, @Andy ! This part, describing Long Covid symptoms, will sound familiar to many ME/CFS patients: Here's a link to what NINDS Director Koroshetz tweeted this morning:

For what it's worth, I just looked more closely at the Feb. 2nd letter sent to Congress (the one that's signed by 11 different ME/CFS groups in the USA) and it also uses the phrase “post-acute COVID-19 syndrome” (but not the PACS acronym).

Here's the #MEAction article about this letter to Congress: https://www.meaction.net/2021/02/04/were-asking-congress-to-not-forget-me/

I've seen "post-acute COVID" (or "post-acute COVID-19") in several other places (and I think I heard it in some video?) but I can't remember where. I do think this may be the first time I've seen the "syndrome" on the end and the PACS acronym.

Yep, that's me. According to my cardiologist, I have both POTS and NCS. I mention this only because I have seen some folks say that you can only have one or the other. NCS is sometimes called, NMH, Neurally Mediated Hypotension, to emphasize the drop in blood pressure more than the faint...

Slides from the video presentation can be found here: https://solvecfs.org/wp-content/uploads/2021/01/1.21.21-Solve-M.E.-Legislative-Cafe-Presentation.pdf

I found the following announcement at the bottom of this page - https://solvecfs.org/finding-resources-and-creating-opportunity-2020-me-cfs-federal-advocacy-report/ - and thought it deserved its own thread.

This is a late reply but that idiom - "in its infancy" - struck me, too. That "infant" is at least 35-40 years old! (probably even older!)

I got an email update about a date change for one of the Solve M.E. webinars. The webinar scheduled for Wednesday, Dec. 9, has been moved to Thursday, Dec. 10, at the same time. Cut/paste from the email: ================ **CHANGE OF DATE!** Thursday, December 10, 2020 Webinar COVID Long...

Thanks for re-posting this. I've seen this chart before but I keep forgetting about it. I do wonder whether I have both "short term" and "long term" PEM? (as defined by this chart) It's hard enough for me to keep track of even those symptoms that come 1-2 days after "too much" (hard to define)...

Thank you @Trish for your letter. I hope your questions get asked during the Solve ME webinar! These definitions are helpful: When I talk about PEM, I mean the first definition above. I thought PEM was always defined as a delayed reaction so I think it's odd that they decided to ignore that...

Found this article about Karyn Bishof, the woman who created The COVID-19 Long Hauler Advocacy Project and who will be participating in this Dec. 9th webinar. Here's the twitter announcement of the same webinar: https://twitter.com/C19LH_Advocacy/status/1330980623805198337

Whitney listed lots of links where folks can pre-order the book (release date is Jan. 5, 2021) but he didn't happen to list where I got my copy. So I'll share two links to Powell's, my local independent bookstore, for any folks in the USA who might find them helpful: hardcover -...

The title of this book in the USA is The Puzzle Solver. In the UK the title is Waiting for Superman. Post from Whitney's twitter account: https://twitter.com/DafoeWhitney/status/1328731229064052737 His Facebook post has more details: https://www.facebook.com/whitneydafoe/posts/212200286984338/

Registration is now open for this online, NIAID-hosted workshop: Workshop on Post-Acute Sequelae of COVID-19 December 3, 2020—December 4, 2020 10:00 AM - 5:00 PM Eastern Time Videocast The workshop will be hosted on the Zoom platform; however, due to space restraints on Zoom, we will also...

I got an email from my congress representative this morning. She is now a co-sponsor of HR 7057!:party::balloons: (I do wish folks would stop using this incorrect boilerplate line describing ME/CFS: "Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome, or ME/CFS is a...

Thanks for the heads up @Dolphin I've just retweeted (well, quote tweeted) one of their tweets about it: https://twitter.com/ahimsa_pdx/status/1323329569089232896 I hope they get some more donations.

Yep, my pop-ups were disabled. Thanks!

Hi @Andy and thanks for posting. I think I'm missing something? I see the zoom link for registration in the previous post. But it's not included in the tweet. The only link in the tweet (...