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News in brief posts for the week of May 26 - June 1: Mastodon Bluesky

#MEAction has released a new video, a slide show of photos along with names and personal stories: The #MillionsMissing Share Their Stories 2025 For those who have trouble with video here's a link to a page with all the still images: https://www.meactions.org/the-millions-missing

https://batemanhornecenter.org/event/online-support-group-97/ Online Support Group Topic: Radical Acceptance: Embracing Life without Condition June 17 @ 1:00 pm - 2:00 pm MDT 8 PM in Great Britain & Ireland Find the time in your time zone here...

News in brief posts for the week of May 19 - 25: Mastodon Bluesky

The Sick Times also has an article on this: Colorado art exhibition showcases creative expressions of Long COVID, advocates for research and treatment

Moved from USA news NPR (National Public Radio) now has a story on this: A stricter FDA policy for COVID vaccines could limit future access

I'm hoping that The Sick Times will report on this issue (restricting COVID vaccines) soon.

Here's a link to the public comment section of the FDA website with this regulaion. People in the USA can leave a comment here. https://www.regulations.gov/commenton/FDA-2025-N-1146-0001 EDIT: I found this page with a template to help you create a comment...

Moved from USA news From Medscape Today: FDA Will Prioritize COVID Vaccine Approval for 65 and Older and High Risk I'm not sure exactly what this means for people in the USA who are under 65 and aren't on the "high risk" list. (I'd bet money that people ME/CFS won't be on that list) Does it...

New blog entry from Bateman Horne Center: A New Path for ME/CFS and Long COVID Research

I think this article is about the paper in this thread: PolyBio and WE&ME supported study identifies two distinct ME/CFS subtypes

I agree that medical records can be really unreliable. The codes listed for my diagnoses (plural, meaning not just the ME/CFS diagnosis) are often inconsistent or even wrong. For example, my after visit notes from a few years ago included a diagnosis of "Myalgic encephalomyelitis syndrome."...

Interesting device! I don't need one now but I'll keep this in mind. Thanks for posting the screenshot.

News in brief posts for the week of May 12 - 18: Mastodon Bluesky

Solve ME Webinar: Probing Functional Autoantibodies in Patients with ME/CFS Thursday, July 31 12 pm Pacific / 3 pm Eastern After her presentation and as time allows, Dr. Iwasaki will take questions from the audience. Webinar registration

I posted about the new PEM factsheet. It got a bit more engagement (on both platforms) than the weekly news. Mastodon Bluesky

#MEAction sent out another update (text for link is from the email subject line): #MillionsMissing 2025: SOS - The Signal Was Sent! Lots more photos and videos - from the protest in DC, from folks who posted from home, and from other countries. Also updates on meetings with congress, more...

The deadline for signing up for Advocacy Week has been extended to May 27. Anyone in the USA is encouraged to volunteer. I signed up myself - I'm a first timer! I've also signed up for the June 4th training session. I wanted to go to the May 28th training session (for new folks) but I had a...

I posted this in the news from #MEAction forum but I thought I'd also post it here. Executive director Laurie Jones sent out an email update that includes photos / videos: Update from #MEAction on Millions Missing 2025

Executive director Laurie Jones sent out an email update that includes photos / videos: Update from #MEAction on Millions Missing 2025 A few quotes: