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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:

Good question - I don't know! I'm not sure there's a portable chair that has a back, is lightweight enough to carry around in the store, and also folds out into a chair quickly enough that I wouldn't end up sitting on the floor (to avoid fainting). But if anyone knows about something like...

Thanks for posting about these. It's always good to have other options! I like the fact that without any pointy legs/feet it would not sink into the mud or grass. I have a folding cane/seat that I use when I go to stores. See image below. (the dysautonomia sticker on the seat is my addition)...

Thanks for the heads up. The last paragraph is terrible!

FYI, video is split into two parts on Bluesky (probably due to a limit in video length?) Tom also posted this video on Mastodon

Massachusetts ME/CFS and FM Association announced their new website design on Bluesky today. Here's the text from their post: website = https://massmecfs.org/ Bluesky post = https://bsky.app/profile/massmecfs.bsky.social/post/3loytzmx32k2g

Statement for World ME Day from Physios for ME: https://www.physiosforme.com/post/world-me-day-2025

“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support

News in brief posts for the week of May 5 - 11: Mastodon Bluesky

Here's a post by Solve ME (a co-founder of the World ME Alliance) which lists six myths about ME: https://solvecfs.org/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/ I can't vouch for how much evidence there is for the "facts" listed but thought...

World ME Day 2025: Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME) The article lists six common myths about ME (e.g., "ME is a mental health condition") along with some corrections for these misconceptions.

From Literary Hub: Two Households, Both Alike in Indignity: An Interview with Anne Ursu Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness" It's hard to pick a section to quote, but here's one that...