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Severe people may hold answers to Long COVID. They must be included in research. After giving several examples of research projects that have included more severe patients, they made these comments:

Okay! "Pay no atttention to the volunteers behind the curtain" :)

The banner is manually updated. I didn't think it mattered but perhaps I should have waited until the banner was updated before I posted on social media? I will consult with the news team about this.

News in brief posts for the week of Jan. 5 - 11: Bluesky news post Mastodon news post

Quoting this bit again: Government guidelines for ME/CFS or POTS in Canada can't even mention Long Covid? Really? But patient organizations can, right? I'm really confused about the idea that a guideline can't mention overlapping conditions, especially since a subset of Long Covid patients...

Upcoming webinar from Solve ME: Protecting the Ones You Love: Legal & Insurance Tools for ME/CFS Caregivers Date: Wednesday, Feb. 11, 2026 Time: 12 - 1 PM Pacific / 3 - 4 PM Eastern Registration link (link will show time in your time zone) Note: The intended audience appears to be US residents.

New video from Solve ME: "What's New in ME/CFS? Interview with Dr. Roshan Kumar" The Solve ME website has a short description of the video: This Week in “What’s New in ME/CFS?”: A Q&A with Dr. Roshan Kumar

Update: The Mastodon server used by the forum is now back online. "News in brief" post on Mastodon for Dec. 29 - Jan. 4

From CIDRAP, another report on the US changes to the childhood vaccine schedule: "HHS announces unprecedented overhaul of US childhood vaccine schedule" https://www.cidrap.umn.edu/childhood-vaccines/hhs-announces-unprecedented-overhaul-us-childhood-vaccine-schedule

Note: The Mastodon server that we used for our forum account is no longer working. The news team is working on a replacement. Meanwhile we will continue to post the latest news on our Bluesky account. "News in brief" post on Bluesky for Dec. 22 - 28 "News...

"Coffee" with a Clinician, from Bateman Horne Center: Topic: Basics of Long COVID, ME/CFS, & Comorbidities Wednesday, January 14, 10 AM MDT (9 am PT / 11 am CT / 12 pm ET) Featuring: - Lucinda Bateman, MD (BHC Founder and Chief Medical Officer) - Moderated by Clayton Powers, DPT (BHC...

Online Support Group from Bateman Horne Center: Topic: Navigating Loneliness and Rebuilding Connection Tuesday, January 20, 1:00 pm - 2:00 pm MDT 8 PM in Great Britain & Ireland Advance registration required - Registration link (registration link shows time in your time zone)

A "year in review" article that talks about the Ramsay Research Grant Program and other research supported by Solve M.E. in 2025: Solve CEO Emily Taylor Reflects On What We Built Together In 2025 and Why It Mattered

Blog post from Dec. 24, 2025: Unexpected Red Leaves By Jo Greer and Helen Guy-Roberts

[Oops, I did not notice that @Amw66 had already posted a link to this! But I'm leaving this here since I included more quotes] Center Left by Fred Rossi: Those Who Were Already Here: Learning to Live Inside a History I Did Not Choose A few quotes:

"Medical Bills Can Be Vexing and Perplexing. Here’s This Year’s Best Advice for Patients." https://kffhealthnews.org/news/article/bill-of-the-month-2025-top-takeaways-best-advice-surprise-bills/ Good advice for anyone in the USA who is dealing with medical bills. It's sad that so many things...

I didn't know that. I thought that the chatbot might see "myalgic encephalomyelitis chronic fatigue syndrome" as a 5 word phrase but not that all the words were always required. How common would this phrase be in the chatbot's training data? Especially when seen without a slash? I'm not used to...

Hmmm. The article used this term for ME/CFS in another section: That kind of error does make it seem like this was partly created by an LLM or chatbot. I think a human writer would be more likely to make the same mistake when naming ME/CFS vs. using 4 different words from a 5 word phrase.

A pretty good attempt to explain ME/CFS. I like that they listed PEM as the very first item in the key facts. And these intro paragraphs are pretty good, other than the reference to SEID as an "often referred to" name. SEID was proposed in 2015 amd then pretty much ignored. Does anyone still...

New video posted on the Bateman Horne Center YouTube channel: Coffee with a Clinician: "Pacing for Holidays and Special Events" (session held on December 10) Summary: