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I wasn't sure where to put the news about this group's July 9 webinar. So I created a new thread for the Patient-Led Research Fund organization. Please move this post if it belongs elsewhere. Website for Patient-Led Research Collaborative Linktree for Patient-Led Research Collaborative...

News in brief posts for the week of June 16 - 22: Mastodon Bluesky

I don't use a duvet at home whether it's summer or winter. I have seen them, in hotels mostly, but they are way too hot for me. Like others have suggested in this thread when I'm stuck with a duvet in a hotel I pull out the middle and just use the cover as a sheet. At home we have cotton...

New ruling, from a Reagan appointed judge (Republican, same party as Trump), saying that the NIH grant cuts were illegal: Judge rules some NIH grant cuts illegal, saying he’s never seen such discrimination in 40 years Note, this only applies to a small fraction of the cuts: Edit: Some...

I'm easily confused, so if this is off-topic feel free to delete it and send me a direct message reply! I know various ME/CFS groups have Facebook accounts (and sometimes private Facebook groups for members). But I don't know which ME/CFS groups offer online forums meant to facilitate support...

News in brief posts for the week of June 9-15: Mastodon Bluesky

Register now for Solve ME's EmPOWER M.E. roundtable, scheduled for Friday, June 27. From a recent email (Read full email here) Registration link

Monthly support call hosted by #MEAction: Caregiver Support Call - Online (Zoom) Saturday, Jun 21 3:30 - 4:30 PM Eastern / 12:30 - 1:30 PM Pacific This link will show the time in your time zone This online support call, held on the third Saturday of each month, is meant for "caregivers of...

News report from #MEAction: Minnesota’s Long COVID Funding Saved from Elimination Edit: Here's the article in The Sick Times which also covers this news.

Three training videos for Advocacy Week 2025 (beginner, intermediate and advanced) have been posted on YouTube. These videos are meant for people who have registered with Solve ME for this year's advocacy week, but I thought the videos might be useful for others who are planning to call (or...

That makes sense. It's not the platform at fault, it's who's running it and who is doing moderation (if any). For example, I'll bet some groups use XenForo for forums that are full of garbage but I quite enjoy the Science for ME forum.

From News-Medical.net: COVID boosters do not harm T-cell function in the vulnerable Direct link to study: No evidence of immune exhaustion after repeated SARS-CoV-2 vaccination in vulnerable and healthy populations

Moving video of Jenna Norton, NIDDK Program Officer and one of the NIH signers of the Bethesda Declaration (link goes to Bluesky post) She talks about why she signed. Here's a transcript for those who have trouble watching videos (it's my attempt at a transcript, please let me know if you find...

Another article from CNN: NIH employees publish ‘Bethesda Declaration’ in dissent of Trump administration policies I liked this quote (I think it's also included in other articles)

News in brief posts for the week of June 2 - 8: Mastodon Bluesky

New blog post: The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived The study being discussed in the blog post: Characterizing Long COVID Symptoms During Early Childhood

From #MEAction Scotland: Millions Missing Scotland 2025 raises a red alert

Just FYI, this link does not work any more, just shows an error message ("The page you’re looking for isn’t available.") I'm guessing that the link used to work and the page has been removed since the initial post. But I don't know for sure.

I'm sure Long Covid and ME/CFS patients who go to the emergency department (I'll use the term "ER" = emergency room) are there for symptoms which they think may need urgent treatment. The patients need the doctor's expertise to figure out whether it's an emergency or not. Long Covid or ME/CFS...

[The headline says Long Covid, so I put it in this forum, but this article also applies to ME/CFS, and probably many more chronic illnesses that aren't well known by the staff in hospital emergency rooms.] Emergency departments aren’t trained for Long COVID — and patients are paying the price