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Liz Burlingame

@lizmeactga.bsky.social
680 followers 763 following 116 posts

Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.

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Reposted by Liz Burlingame
#MEAction Network @meactnet.bsky.social · 23/09/2026
Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference. #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH
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Reposted by Liz Burlingame
#MEAction Network @meactnet.bsky.social · 24/09/2026
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry." #MECFS #pwME
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Reposted by Liz Burlingame
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
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Reposted by Liz Burlingame
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Reposted by Liz Burlingame
Plague Poems @plaguepoems.bsky.social · 22/09/2026
It is understandable if upon hearing how this administration is kicking 750,000+ people off of their Affordable Care Act coverage you find yourself thinking “that is a sick thing to do,” which is a fair response for one of the things this will do is make people sick.
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Reposted by Liz Burlingame
#MEAction Network @meactnet.bsky.social · 18/09/2026
When asked whether they are looking at doing a cohort that are aging with ME/CFS...Klimas says.."I would love to do this study..would someone help me find the funding?"
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Liz Burlingame @lizmeactga.bsky.social · 17/09/2026
Schwartz has made no public appearances or remarks. What little official communication that has come from the agency has been from social media and overtly political. thehill.com/policy/healt...
thehill.com
CDC director’s ‘unusual’ silence draws scrutiny
Just a month into her tenure as director of the Centers for Disease Control and Prevention (CDC), Erica Schwartz is missing in action. The country is heading into respiratory virus season, and publ…
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Reposted by Liz Burlingame
El of LA @elofla.bsky.social · 15/09/2026
Re-upping this article. Something I very do only RARELY. This article is way too important to let the post 'die' and it was covered last night strongly on MS Now. newrepublic.com/article/2151...
newrepublic.com
The Final Battle for America’s Democracy
Forget November 3. It’s January 3 when Donald Trump and his MAGA Republicans might bury our democracy once and for all. Here’s how.
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Reposted by Liz Burlingame
Chronic Illness Humor @chronicillness.bsky.social · 11/09/2026
These are the things that trigger my chronic illness: 1) Everything
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Liz Burlingame @lizmeactga.bsky.social · 11/09/2026
Gratitude to @warnock.senate.gov, Sen. Ron Wyden and 47 of their colleagues for taking the lead in protecting the health of all Americans. People should not have to prove that they are "sick enough" to deserve health care. #frailandfurious www.warnock.senate.gov/newsroom/pre...
warnock.senate.gov
Warnock, Wyden Push Trump Administration to Cut Red Tape Requirements in Medicaid » Reverend Raphael Warnock
Senators Reverend Raphael Warnock and Ron Wyden are calling on the Trump administration to withdraw a policy that imposes strict Medicaid eligibility requirements on Americans seeking to obtain and ma...
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Liz Burlingame @lizmeactga.bsky.social · 04/09/2026
The relentless work of being sick www.motherjones.com/media/2026/0...
motherjones.com
The relentless work of being sick
A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.
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Liz Burlingame @lizmeactga.bsky.social · 16/08/2026
@julierehmeyer.bsky.social being brilliant, as always. jrehmeyer.substack.com/p/there-to-c...
jrehmeyer.substack.com
There to Catch Me
I got some hard news
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Liz Burlingame @lizmeactga.bsky.social · 15/08/2026
Please help a remarkable student-athlete and caregiver trying to keep his college dreams alive. Even a quick share can help this story reach someone who might be able to support or donate—every bit makes a difference in helping him stay on track for his future! 🌟 gofund.me/2f5a494f9
gofund.me
Donate to Help Support a Student-Athlete & Caregiver's College Dreams, organized by Karyn Bishof
Help Keep a Remarkable Student-Athlete’s College Dreams Withi… Karyn Bishof needs your support for Help Support a Student-Athlete & Caregiver's College Dreams
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Liz Burlingame @lizmeactga.bsky.social · 07/08/2026
Nick and Maggie are currently first in their group! Please vote (it's free) and let's make them America's favorite couple! americasfavcouple.org/2026/nick-an... @maggieboxey.bsky.social
americasfavcouple.org
Vote for Nick And Maggie Boxey as America's Favorite Couple!
One couple will share their love story in a Variety Magazine advertorial, take home $20,000, and enjoy a triple date with Jeff & Emilie Goldblum, plus Charlie Day & Mary Elizabeth Ellis.
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Reposted by Liz Burlingame
Get Out The Mid Term Vote @gotmtv.bsky.social · 07/08/2026
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Liz Burlingame @lizmeactga.bsky.social · 31/07/2026
The 'silent epidemic' of Long COVID has historical precedent. In 2017, the CDC referred to #mecfs as 'America's Hidden Health Crisis'. People with ME/CFS have been here before. We've been here for decades. @wbez.org @meactnet.bsky.social
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Liz Burlingame @lizmeactga.bsky.social · 30/07/2026
Only 40 more signatures and we'll exceed 3,000! Please add your name and share with friends. Let's go!! 📣 c.org/ypkBY5Bvgt
c.org
Sign the Petition
WIRED Magazine, Retract "The Painful Truth About Long Covid"
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Reposted by Liz Burlingame
Dave Karpf @davekarpf.bsky.social · 28/07/2026
I'm reading the "environmentalists are wrong about data centers" piece from the NYT and ohmygoditssofuckingbad. Apparently, so long as you're punching left, they'll just let you say any goddamn thing you please... www.nytimes.com/2026/07/25/o...
nytimes.com
Opinion | The Environmental Case Against Data Centers Is Misguided
Our animosity toward data centers is really more about our anxieties about A.I.
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Liz Burlingame @lizmeactga.bsky.social · 28/07/2026
I'm on a quest: only 60 more signatures and the WIRED magazine petition will exceed 3,000. Please add your name and share. Thanks in advance! c.org/WTkgqt9xGL
c.org
Sign the Petition
WIRED Magazine, Retract "The Painful Truth About Long Covid"
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Liz Burlingame @lizmeactga.bsky.social · 25/07/2026
Almost 3,000 signatures! Please sign on and help us demand journalistic accountability. www.change.org/p/wired-maga...
change.org
Sign the Petition
WIRED Magazine, Retract "The Painful Truth About Long Covid"
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Liz Burlingame @lizmeactga.bsky.social · 23/07/2026
I know this guy. He & his crew are the landscapers that care for our yard. He was arrested by ICE. Just taken off the street by masked men. He is guilty of nothing. His family is not being told where he is. This is America. I'm ashamed of my country. Plz help & bring him home. gofund.me/82a114dd6
gofund.me
Donate to Help Bring Rafael Villegas Zuniga Home, organized by Joselin Gomez
Help Rafael Villegas Zuniga come back home. Rafael is a very hard worki… Joselin Gomez needs your support for Help Bring Rafael Villegas Zuniga Home
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Liz Burlingame @lizmeactga.bsky.social · 19/07/2026
Great words, Bipartisan Collaboration. More of this, please! #gapol
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Liz Burlingame @lizmeactga.bsky.social · 16/07/2026
Nick and Maggie are currently first in their group! Maggie is a powerful advocate and she and her husband are both military veterans. Join me and cast your FREE vote at the link 👇🏼 americasfavcouple.org/2026/nick-an...
americasfavcouple.org
Vote for Nick And Maggie Boxey as America's Favorite Couple!
One couple will share their love story in a Variety Magazine advertorial, take home $20,000, and enjoy a triple date with Jeff & Emilie Goldblum, plus Charlie Day & Mary Elizabeth Ellis.
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Liz Burlingame @lizmeactga.bsky.social · 14/07/2026
Discussions about Long COVID today remind me of CFS in the 1990s. This excellent article talks about people with LC taking meds like peptides b/c they believe they have nothing to lose. I used to buy meds from an HIV/AIDS buyers club b/c after I contracted CFS, I was willing to take anything too.
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Reposted by Liz Burlingame
Kate Violette @kateviolette.com · 14/07/2026
A very big thank you from me also to everyone who has donated already! 💜 I hope to write an update in the GFM soon, but know that your help has gotten me through my first month! My friend Nick will be matching donations today; reposts appreciated to help get his post in front of new eyeballs! :)
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Liz Burlingame @lizmeactga.bsky.social · 07/07/2026
Hi, I’m supporting this fundraiser on GoFundMe. If you can, please consider supporting by donating or sharing the link. Every bit of support makes a huge difference. gofund.me/3afc9bd3f
gofund.me
Donate to Help an M.E. Patient and Her Caregiver Safely Escape Abuse, organized by Rachel and Julian Wilson
Rachel, a person with Moderate-Severe ME, as well as her only… Rachel and Julian Wilson needs your support for Help an M.E. Patient and Her Caregiver Safely Escape Abuse
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Liz Burlingame @lizmeactga.bsky.social · 06/07/2026
Good article about former runners but I wanted to hear more from @maggieboxey.bsky.social. Some people recover from injury or illness but for those of us with ME/CFS, recovery is far from certain. Maggie spoke about this in her TED Talk last year...
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Liz Burlingame @lizmeactga.bsky.social · 25/06/2026
The thing that bothers me most about the @wired.com Long COVID article is that the "journalist" failed to show genuine empathy. He's not sick w/LC. If he was suffering today (like I am) he would never think that "brain retraining" would actually relieve his symptoms.
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Reposted by Liz Burlingame
The Tennessee Holler @thetnholler.bsky.social · 22/06/2026
Let’s check in on how Jared and Ivanka’s luxury Albanian resort is doing…
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Liz Burlingame @lizmeactga.bsky.social · 19/06/2026
How many of these troops will never recover? People with #mecfs have sounded the alarm for decades. IACCIs must be taken seriously. I caught the flu in 1991 at the age of 23. I am disabled and mostly confined to bed. RFK needs to resign. www.nbcnews.com/news/us-news...
nbcnews.com
Flu sickens scores of troops at Air Force base after Pentagon ends vaccine requirement
The number of sickened troops could be over 200, according to a source at the base.
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Liz Burlingame @lizmeactga.bsky.social · 19/06/2026
Hi everyone. I’m reaching out to ask for support for this GoFundMe. Jes and Alex are going through a difficult time and need just a little help. Please donate or simply share the fundraiser. Thanks in advance! Here’s the link: gofund.me/542d4358c
gofund.me
Donate to Supporting Jes and Alex Through Their Transition, organized by Alex Gordon
Thank you for taking the time to see our Go Fund Me page. We both know th… Alex Gordon needs your support for Supporting Jes and Alex Through Their Transition
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Liz Burlingame @lizmeactga.bsky.social · 12/06/2026
A dear friend of mine could use some assistance. Please donate and share if you can. Every little bit helps. Thanks in advance! gofund.me/8e1a28b82
gofund.me
Donate to Supporting Jes and Alex Through Their Transition, organized by Alex Gordon
Thank you for taking the time to see our Go Fund Me page. We both know th… Alex Gordon needs your support for Supporting Jes and Alex Through Their Transition
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Reposted by Liz Burlingame
Wilhelmina Jenkins @wilhelminaj.bsky.social · 11/06/2026
What century are we in? Forget all of that post-scientific revolution nonsense about viruses, bacteria, and physical body systems - it’s the demons and the stories around the campfire- or support groups. Same thing, right? This is brilliant, @meighanstone.bsky.social .
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Reposted by Liz Burlingame
Elke Hausmann @drelke.bsky.social · 11/06/2026
‚The difference between Long Covid and the Long Covid Debate is that you can just choose to leave the Long Covid Debate whenever you want to.‘ Poignant quote from @1goodtern.bsky.social whom I wish would be more active on here, like so many good people still on that hellhole site… #LongCovid
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Chronic Illness Humor @chronicillness.bsky.social · 11/06/2026
The key to living a fulfilling life with chronic illness is low expectations.
Lower.
Nope, even lower.
There you go.
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Liz Burlingame @lizmeactga.bsky.social · 11/06/2026
Check out @meighanstone.bsky.social offering a brilliant clap back to the Alan Levinovitz article for WIRED. #longcovid requires science, not brain retraining. And no, demons are not to blame for your disease. #mecfs #millionsmissing x.com/i/status/206...
x.com
Meighan Stone (@meighanstone) on X
DEMONS, you're on notice 👿 Inspired by @JMU @AlanLevinovitz's brave @WIRED #LongCOVID reporting, @LCCampaign will now take on two new causes of chronic illness: demons and storytelling. Move over, K-P...
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Reposted by Liz Burlingame
dabxdee.bsky.social @dabxdee.bsky.social · 08/06/2026
youtube.com/shorts/5sOs3...
youtube.com
#Trump on #MeetthePress is so much better with the full backstory #news #meltdown
YouTube video by Ohh that's RICH
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Reposted by Liz Burlingame
Mark Faghy @profmarkfaghy.bsky.social · 29/04/2026
Our new paper is here: Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
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Liz Burlingame @lizmeactga.bsky.social · 08/06/2026
Jaime Seltzer - @exceedhergrasp1.bsky.social - doing the work. Showing up and speaking out in Washington, DC. Because people with #MECFS deserve to be treated with dignity. #frailandfurious #MillionsMissing #MEwarrior
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Reposted by Liz Burlingame
ACLU @aclu.org · 07/06/2026
There are currently more bills attacking trans youth’s right to play sports across the U.S. than there are trans youth in school sports.
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Liz Burlingame @lizmeactga.bsky.social · 07/06/2026
Most memorable quote, "I don't know who to see when the DOJ breaks the law."
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Reposted by Liz Burlingame
Matt Lazell-Fairman @mfairma.bsky.social · 02/06/2026
Canceled my subscription @wired.com
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Reposted by Liz Burlingame
Elke Hausmann @drelke.bsky.social · 03/06/2026
Shoutout to some excellent German psychologists working on #LongCovid - check out the link for who they are
There are some anecdotes of researchers andpatients being cancelled if they dare to talk about recovery. There is also talk about how it is impossible to do research into any psychological aspects of Long Covid: psst,
"the patients are listening," he [another unnamed researcher afraid of patients] whispered, "talking about psychology can destroy your career". Curiously, I can think of some excellent psychologists doing work on Long Covid in Germany whom nobody wants to cancel; I wonder what they are doing differently?!
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Conor Browne @brownecfm.bsky.social · 03/06/2026
Remember that the existence of Long Covid and the fact that millions of people worldwide are suffering from it creates an extraordinary dissonance in the minds of a section of the population who wish to believe the falsity that Covid is no longer dangerous, and perhaps never was.
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kathleenoneill.bsky.social @kathleenoneill.bsky.social · 29/05/2026
In honor of Julia, too sick to attend. Image 1 sign inspo @ Sunniva Innstrand on IG & David Wojnarowicz. Like HIV/AIDS crisis, neglect of ppl w/ ME is public health failure. Sign petition protect Medicaid c.org/2jXD7kFHMk @meactnet.bsky.social #FrailAndFurious #MillionsMissing #MEawareness26 #pwME
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Reposted by Liz Burlingame
Billy Hanlon @bhanlon15.bsky.social · 22/05/2026
"Long COVID Changed Everything" 'What a mass disabling event revealed about medicine’s limits' By Brittani James, MD www.blog.brittanijamesmd.com/p/long-covid...
blog.brittanijamesmd.com
Long COVID Changed Everything
What a mass disabling event revealed about medicine’s limits
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Liz Burlingame @lizmeactga.bsky.social · 22/05/2026
health is fragile, recovery is not always linear, and human worth cannot be reduced to consistent productivity. No one knows this better than people with ME/CFS. open.substack.com/pub/brittani...
open.substack.com
Long COVID Changed Everything
What a mass disabling event revealed about medicine’s limits
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Liz Burlingame @lizmeactga.bsky.social · 12/05/2026
Advocates from the #MECFS community used to engage with the experts at the CDC. This picture was taken in 2024. @firedbutfighting.bsky.social meet #FrailandFurious
Patient advocates from MEAction GA are sitting in front of the CDC campus in Atlanta. Some of the people are in wheelchairs, all are wearing blue in honor of the International ME/CFS Awareness Day. This is a screenshot from the CDC's social media post from May 12th, 2024.
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Liz Burlingame @lizmeactga.bsky.social · 12/05/2026
I'm one of the "Frails" in this reel. I have #MECFS. There is no FDA-approved treatment. The CDC has been gutted. Experts fired. And now Medicaid work requirements threaten to take my healthcare. Call me frail but don't you dare take my healthcare.
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Liz Burlingame @lizmeactga.bsky.social · 10/05/2026
"What did the media get wrong when they covered the COVID-19 pandemic?" The media failed to report the long term consequences of contracting a virus. Some/many people were going to get sick and never recover. No one understood that better than people with #MECFS. Plz talk to @meactnet.bsky.social
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