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avalon22.bsky.social
Lolly
@avalon22.bsky.social
Enjoy a good story, the sound of music, and snow flakes on eye lashes.
Reposted by Lolly
Join us May 16, 2025 for this Renegade Research #Clinician's Roundtable!

Stuart Malcolm, MD, medical director of RTHM and John Haughton, MD, medical director of Renegade Research, will have a discussion about #ME and #LongCovid challenges, tests & treatment pathways.

Registration link below!
Register for this event at:

us06web.zoom.us/webinar/regi...

Live Q&A after the discussion!

If you have a Question or Topic that you would like to see addressed during this conversation, send here: shorturl.at/tVMOW

Follow on Bluesky:
@doc4care.bsky.social @rthm.bsky.social

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April 29, 2025 at 2:30 PM
NPR says about 1 percent of their funding comes from Federal grants so it is time to up that subscription now that the fat cat site an executive order last night to defund them. apple.news/Ag-FA55CkSO2...
Trump orders end of NPR's federal funding. And, judge blocks use of Alien Enemies Act — NPR
Trump signed an executive order to end federal funding for NPR and PBS, accusing the organizations of political bias. And, a federal judge ruled Trump's usage of the Alien Enemies Act was unlawful.
apple.news
May 13, 2025 at 6:32 PM
Reposted by Lolly
May 8, 2025 at 12:14 AM
Reposted by Lolly
May 8, 2025 at 12:14 AM
Reposted by Lolly
A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS

www.aquietstorm.me

#SevereME #MEcfs @nikosuvisto.bsky.social
May 2, 2025 at 12:58 AM
April 30, 2025 at 5:43 PM
Reposted by Lolly
Some good news: district court in Atlanta orders: ICE must reinstate legal status of 133 international students by 5 p.m.
www.yahoo.com/news/ice-mus...
ICE must reinstate legal status of 133 international students by 5 p.m., order states
The Trump administration has until 5 p.m. today to reinstate the legal status of 133 international students, according to an order granting temporary restraining orders issued by a federal judge.
www.yahoo.com
April 22, 2025 at 1:34 PM
Deadline: 3/27
The president and EPA leadership wants to rescind NEPA.

Comment on the Federal eRulemaking Portal. Include the agency name, "Council on Environmental Quality," and the docket number, CEQ-2025-0002.

www.federalregister.gov/documents/20...
Removal of National Environmental Policy Act Implementing Regulations
This interim final rule removes the Council on Environmental Quality (CEQ) regulations implementing the National Environmental Policy Act (NEPA) from the Code of Federal Regulations. In addition, this...
www.federalregister.gov
March 27, 2025 at 11:53 AM
Reposted by Lolly
More #medEd!
Given how reinfections increase the risk of Long Covid, it’s critical that primary doctors and healthcare workers can diagnose and treat Long Covid. There aren’t enough specialists to care for people with Long Covid.
The Sick Times: “A lack of provider literacy is straining people with Long COVID. Training programs for doctors could help.”

thesicktimes.org/2025/02/28/a...
March 5, 2025 at 4:12 AM
Reposted by Lolly
Check out the external affairs page at NOAA right now. That's right. Everyone at NOAA external affairs was fired.
www.noaa.gov/external-aff...
March 1, 2025 at 12:57 AM
Reposted by Lolly
"History will remember this day— when an American President and Vice President abandoned all we stand for."
February 28, 2025 at 9:25 PM
Reposted by Lolly
Americans rely on NOAA for lifesaving weather forecasts and so much more. So why do Elon Musk and the DOGE boys want to dismantle it?

Well, it has nothing to do with government efficiency and everything to do with lining the pockets of Big Oil and other commercial interests⬇️
The REAL reason Elon Musk and DOGE are trying to dismantle NOAA
YouTube video by Senator Chris Van Hollen
youtube.com
February 13, 2025 at 7:35 PM
Reposted by Lolly
They can try to hide this all they want, but this is just the tip of the iceberg of Elon Musk’s conflicts of interest.

Since they fired the Inspectors General who would’ve held him accountable, we’ll see unprecedented levels of corruption until we end Musk's illegal raids on federal agencies.
Plans to Buy ‘Armored Teslas’ Vanish From State Department Procurement List
The State Department’s procurement forecast removed the mention of Elon Musk’s Tesla Inc. in relation to a planned $400 million armored EV purchase after reports emerged about it on Wednesday.
www.bloomberg.com
February 13, 2025 at 3:39 PM
Reposted by Lolly
This is not about efficiency, it is idiocy, and illegal at that. The idiocy we cannot reverse — but we can reverse their illegal actions. 
 
My full statement on Trump’s actions against federal workers:
February 15, 2025 at 10:16 PM
Thank you CS for putting together this summary of recent changes to the US Health Agencies from the perspective of ME/CFS. colleensteckelmeiccinfo.substack.com/p/changes-to...
Changes to US Health Agencies in 2025
Tracking info that may affect pwME
colleensteckelmeiccinfo.substack.com
February 16, 2025 at 8:45 PM
Reposted by Lolly
@ellybrosius.bsky.social

You probably already have this, but it's still good to boost!
This is a guide for patients having surgery

me-pedia.org/wiki/Guide_f...

Recs for surgery and anesthesia by several ME/CFS experts

www.anapsid.org/cnd/drugs/an...
Guide for patients having surgery
me-pedia.org
February 16, 2025 at 8:04 PM
Reposted by Lolly
Post on #kauai subreddit says National Wildlife Refuge folks working to save the few remaining native birds on the island were all fired with very little notice yesterday.

Science is the enemy of fascism in case you hadn't noticed.

#uspol
February 16, 2025 at 4:09 AM
IApril 19 we stage massive peaceful protests in every city and town — crowds of Americans celebrating the anti-monarchical uprising of 1775 and pledging their allegiance to that heritage by denouncing Trump’s increasingly autocratic rule: Thereby flooding Trump and Musk’s zone still further.
February 10, 2025 at 12:54 PM
Reposted by Lolly
Redirecting...
www.facebook.com
February 9, 2025 at 6:22 PM
Reposted by Lolly
Crockett: "If feels as if y'all have just decided that y'all are gonna castrate your constitutional duty & hand it over to someone who was unelected. It doesn't matter how many cheerleaders he had on the field campaigning for him. That doesn't mean he gets to go in and sit atop any of our agencies"
February 5, 2025 at 5:58 PM
Reposted by Lolly
Have you been asked, as a federal worker, to do something you don't want to do? But they won't put it in writing?

DON'T DO IT.

If they're going to punish you? MAKE THEM PUT IT IN WRITING. ALL OF IT.

Document, document, document.

Act confused. Be confused! Go slow. Require clarity. Lots. Document
February 6, 2025 at 5:37 PM
Reposted by Lolly
Jeremy Jeffs is a filmmaker and photographer whose experience of living with ME/CFS inspired him to talk to and photograph others with the same illness.

wellcomecollection.org/stories/livi...

Image is from free AMMES February 2025 e-newsletter

#MEcfs #PwME @talmandaniel.bsky.social
February 6, 2025 at 10:05 PM
Reposted by Lolly
Americans are confused, scared and angered by President Trump’s escalating attacks on our independent, professional and dedicated civil service.

That's why I convened top federal workforce experts for this emergency webinar sharing crucial information.
Rep. Raskin’s On-Demand Webinar for Federal Workers Facing the Trump-Musk Assault on our Government
YouTube video by Rep. Jamie Raskin
www.youtube.com
February 5, 2025 at 2:38 AM
Reposted by Lolly
Elon Musk is systematically seizing control over our nation’s communications, financial systems and data and military infrastructures.

Musk isn’t a fourth branch of government, just another Silicon Valley who wants to be dictator of the world.
February 5, 2025 at 6:10 PM