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Announcement on the ME Action website, posted on August 2nd: https://www.meaction.net/2022/08/02/just-in-time-for-school-pediatric-pacing-guide/

The summer 2022 edition of the Solve M.E. Chronicle is now available. Link to PDF: https://solvecfs.org/wp-content/uploads/2022/08/Chronicle_Summer_2022.pdf

It looks like they have changed the headline on this opinion piece. Same author, same date, but the new headline is, If You’re Suffering After Being Sick With Covid, It’s Not Just in Your Head The author posted a gift link (no paywall link) on twitter today...

Ten minutes seems like a rather short time frame for a tilt test. I thought that at least 30 minutes was more usual? And I remember in the 1990s the recommendation from Dr. Rowe at Johns Hopkins was 45 minutes. A 10 minute tilt table test might be long enough to find what they call "classic...

Moved post Washington Post article about Long Covid and the brain: How long covid reshapes the brain — and how we might treat it Gift link (no paywall for 14 days) - https://wapo.st/3ww3wIK (Note: In the past gift links have not worked for some forum members but I'm sharing it in hope that...

New op-ed in The Philadelphia Inquirer by Jennie Spotila: Let’s approach COVID like the weather. Depending on conditions, we grab an umbrella (or mask) Tweet from the author:

I'm not sure how exactly our forum members might use this type of guideline, but I came across this recently and found it interesting. Link to PDF file created by MEAction: Journalist Primer: How to Report on ME/CFS

MEAction sent an email with new information for the #MillionsMissing September 2022 Protest. I've copied the full text into the quote section below. Here's a link to the #MEAction website with more information: https://millionsmissing.meaction.net/protest2022/

#MEAction will hold a Virtual Town Hall on August 27 from 12:00 – 1:00 pm PDT (3:00 - 4:00 pm EDT). This purpose of this meeting is discuss the #MillionsMissing September 2022 Protest in Washington, DC - now scheduled for Monday, September 19 at noon (new date). The BlueJeans Events app will...

A new video on Post Exertional Malaise (40 minutes) has been posted on the Bateman Horne Center YouTube channel: From the video description field:

I'm replying to my own comment to add that Solve M.E. obviously has a longer term strategy with this PSA series. They did mention this in their announcement: So I should probably be patient and wait for the whole thing to play out. Maybe they decided that unknown terms in the first PSA would...

I'm happy they made this PSA, but I do wish there was at least one mention of ME/CFS in the video (eg, "many Long Covid patients meet the diagnostic criteria for ME/CFS..."). FYI, the link in the PSA - solvelongcovid.org - redirects to https://solvecfs.org/solve-long-covid/

Thanks for transcribing that quote! I was just coming here to do that. :) Screen shot from about 9:20 in the video:

The reason I was surprised by the "and" in the name is because this is a document from a US government organization. I've never seen this phrasing on either the CDC or NIH websites. I figured this document would use the same wording that's used by other government bodies.

Continuation of notes from the @s4me_info twitter thread. This post is a copy of notes made during the July 30 session at 1:30 PM on Public Health. There were four presenters, Cathy Kline, Gloria Gray, Erin D. Maughan, and Nancy Klimas. === start of comments === The next presentation is by...

Continuation of notes from the @s4me_info twitter thread. This post is a copy of notes made during the July 30 session at 11:00 AM on Treatment. There were four presenters, Luke Liu, Nicola Clague-Baker, Rosie Twomey, and David Kaufman. === start of comments === The first speaker is Luke Liu...

Thanks for posting those extracts, @Wyva! On a slight tangent, I noticed this phrase several times: I don't remember seeing ME/CFS written out with an and in the middle. I think it's usually just a slash, same as in the shortened version. I wonder whether phrasing it this way means anything...

Continuation of notes from the @s4me_info twitter thread. This post is a copy of notes made during the July 30 session at 9:45 AM, Immunology/ Infectious Diseases 2. There were three presenters, Wakiro Sato, Gunnar Gottschalk, and Brandon Cox. === start of comments === The next presentation...

During the conference volunteers live-tweeted during several of the conference sessions using the forum's twitter account, s4me_info. This post is a copy of notes made the morning of July 30. There's a brief announcement made by Irina Rozenfeld on changes to ICD coding followed by notes on the...

I forgot to post about this when I first heard about it, but better late than never! MEAction has a new podcast called Chronically Complex. There have been two episodes so far. Episode 1 featured Meghan O’Rourke, author of the book The Invisible Kingdom. There's a transcript of that episode...