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Thanks for the first person report on the Hilo device, @Fainbrog ! Here's an article that shows what it looks like: FDA clears over-the-counter, cuffless blood pressure monitor with the Hilo bracelet

What I've read about Pemgarda and other similar drugs is that they are not a replacement for vaccination. They do seem to be helpful for immunocompromised folks. I found several links from 2024 saying that monoclonal antibodies are not a substitute for vaccines. Some patients are advised to get...

News in brief posts for the week of Aug. 25 - 31: Mastodon Bluesky

Weirdly, this other news article has a map showing that Oregon (my state) is one of the states that should not require a prescription. States where you can get a COVID vaccine at CVS following RFK Jr. changes I'm confused. Maybe it's a CVS vs. Walgreens thing? Maybe the Walgreens website is...

Article (CBS news) about limited access to COVID vaccines in the USA. CVS and Walgreens limit access to COVID vaccines as required by some state guidelines Note that this is not just about age limits. My husband is 73. I thought there would be no restrictions for COVID vaccines for anyone...

Yep. But we do believe in selling ivermectin over the counter - no prescription needed! https://www.pharmacytimes.com/view/four-states-pass-laws-allowing-for-otc-ivermectin-more-states-pending-legislation

I can't answer the question but I just wanted to post that I'm another ME/CFS patient who has also had endometriosis, confirmed by surgery. For me, surgical removal (excision, not laser ablation) of the endometriosis stopped almost all of my pain. But I have read that surgery does not help...

Online Support Group from Bateman Horne Center Topic: The Chronic Illness Experience: Creating Purpose and Meaning Tuesday, September 16, 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)

Online Support Group from Bateman Horne Center Topic: Moving from Humilitation and Shame to Humility and Pride Tuesday, September 9, 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)

New blog post on severe ME/CFS from Bateman Horne Center: Finding Comfort When Bedbound: A Community Member Shares Her Advice

A new agenda has been posted for the RECOVER-TLC workshop: https://fnih.org/wp-content/uploads/2025/08/RECOVER-TLC-Workshop-Agenda-08_22_2025-4.pdf Announcement here: https://fnih.org/our-programs/recover-tlc-will-advance-long-covid-research/recover-tlc-hybrid-workshop/

Yeah, I understand. I mostly don't use automated tools. Not just the ones by Solve ME, I avoid automated tools used by all organizations. At least with Solve ME they do seem to remove you from their email list if you unsubscribe. I also try really hard to never share my cell number because...

CDC officials escorted from headquarters as chaos engulfs public health agency Several top CDC officials (Dr. Deb Houry, Dr. Demetre Daskalakis, and Dr. Daniel Jernigan) have resigned. You can read their resignation letters here: Breaking News: Read three top CDC officials' resignation...

FYI, here's the YouTube link, it's on the DecodeME channel: I thought this link had already been posted but I can't find it so I'm just posting it here.

Folks in the USA can use this automated toolkit to contact your house representative to protect funding for ME/CFS: https://solvecfs.quorum.us/campaign/136258/ And if you havefriend/relatives who live in a different district please ask them to contact their house representative, too! The...

Thanks for the update @Mike Harley - always love to hear from you! So sorry about the pain, but I'm glad to hear that you're still able to run. Take care! :heart:

Here's a Bluesky post with a similar message:

@Jaybee00 - thanks for posting the agenda! An announcement of this symposium is now on the main page of the Stanford Genome Technology Center website: https://med.stanford.edu/sgtc.html And the symposium agenda is also available there (as a PDF) for those who need a clearer version.

Solve ME article on research led by Dr. Maureen Hansen: Extracellular Vesicle Proteins in Men with ME/CFS: Changes Before and After Exercise Correlate with Key Symptoms Forum thread for this study is here...

The latest post on virology blog from David Tuller, covers multiple subjects: David Tuller: Trial by Error: Keystone Gathering Update; Anil’s Severe ME Day Video; Fractured Care for Post-Infectious Illness