Liz Burlingame
@lizmeactga.bsky.social
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Living with ME/CFS since 1991. Here for the long haul. I am one of the
#MillionsMissing
.
reposted by
Liz Burlingame
#MEAction Network
18 days ago
Take action TODAY! Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1. Sample language & link:
docs.google.com/document/d/1...
#MedEd
#CME
#MECFS
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Liz Burlingame
Erin Lee
25 days ago
I was like 5 hours into an emotional breakdown when i had my first bite of the strawberry pie from
@rachelriggs.bsky.social
cookbook In Good Health, and my goodness! I have never been so fully transported by a bite of food. What a bright, sunny dessert! The whole family is raving.
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Liz Burlingame
šTom Wambsgansā Second Wife, PhD
about 1 month ago
āNo one in the world holds a grudge like me.ā OMG this woman might be my platonic soulmate.
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reposted by
Liz Burlingame
#MEAction Network
about 1 month ago
Join us in wishing our Scientific Director
@exceedhergrasp1.bsky.social
our best as she participates in this week's Stanford ME/CFS conference! Sending our best to all participating! Community Symposium is Sept. 5th at 8 am PT. Register:
stanford.zoom.us/webinar/regi...
@openmedf.bsky.social
#pwME
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Liz Burlingame
Fired but Fighting (National Public Health Coalition)
about 2 months ago
It is true HHS cuts to CDC HR are causing real-life problems. šLet's be clear,
#DOGE
DID THIS! š We want other fed worker stories added to highlight the struggles of probationary employees & short term employees. They are struggling without jobs, insurance, IT threatening police reports, & more.
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Liz Burlingame
Lena Sun
about 2 months ago
NEW: More than 750 current and former staff of HHS, including @CDCgov, and NIH, have signed a letter to RFKJr and members of Congress accusing him of endangering the lives of employees and the American people following the Aug 8 attack on the CDC.
www.savehhs.org/letter/hhs-s...
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HHS Staff Response to the August 8th Attack ā Save HHS
Public servants and allies are standing together to demand work environments free from violence, accountability for leaders and policymakers who put everyday Americans in danger, and public health lea...
https://www.savehhs.org/letter/hhs-staff-response-to-the-august-8th-attack
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I stand with the CDC. The Atlantic magazine quoted a veteran CDC employee saying, āIām actually surprised it didnāt happen sooner.ā
www.ajc.com/opinion/2025...
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The anti-vax chickens come home to roost in shooting at CDC
Somehow, in this new twisted world we now inhabit, Anti-Vaxxer In Chief Robert F. Kennedy Jr. is the person charged with overseeing the nationās health, including the CDC.
https://www.ajc.com/opinion/2025/08/the-anti-vax-chickens-come-home-to-roost-in-shooting-at-cdc/
2 months ago
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Liz Burlingame
Julie Rehmeyer
2 months ago
Big news from me! After years of being too sick to do any significant writing, I'm now well enough to launch a Substack, The Weighing. I'll be writing about the clean energy transition in New Mexico, liberal education, and severe myalgic encephalomyelitis. Join me!
open.substack.com/pub/jrehmeye...
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What the World Asks, What We Give: Energy, Learning, and Suffering
Or: I Bolted My Head Back On. Now Iām Writing Again.
https://open.substack.com/pub/jrehmeyer/p/what-the-world-asks-what-we-give?r=3c81q&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
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Liz Burlingame
Dr. Lucky Tran
2 months ago
No, it's not only the US who will suffer from RFK Jr cancelling vaccine research. 1ļøā£ You can't just instantly teleport research projects. Cancelling US projects slows global progress. 2ļøā£ Preventing pandemics will always be a group project. The US is letting the team down & putting the world at risk.
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Liz Burlingame
George Takei
2 months ago
I remember when this happened.
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Liz Burlingame
It's ME(Jaime)
2 months ago
Learned earlier this evening that the
#MECFS
Collaborative Research Center at Columbia's funding was restored... it's a huge relief to know that their work will move forward. Congrats to the whole lab! š§Ŗ
#NEISvoid
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reposted by
Liz Burlingame
2 months ago
Good news for pwME used to bad news!
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Liz Burlingame
Josh Marshall
3 months ago
NEW: Sec. Noem has now admits "last mile" disaster communications weren't up to par in the Texas catastrophe. But while bodies were still being recovered on Tuesday DHS canceled a $3 million grant focused on improving precisely those kinds of "last mile" comms.
talkingpointsmemo.com/edblog/dhs-c...
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DHS Cancels Extreme Weather Comms Grant While Bodies Still Being Recovered in Texas
As more than a hundred fatalities have been confirmed in Texas flash...
https://talkingpointsmemo.com/edblog/dhs-cancels-extreme-weather-comms-grant-while-bodies-still-being-recovered-in-texas/sharetoken/1ae01ce6-3274-4b56-8da4-74a64b9ca750
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Liz Burlingame
Emily Johnson
3 months ago
The MECFS Minnesota Clinic is hosting a panel right now by clinicians sharing Long Covid and MECFS news and care resources! The clinic treats patients in-person and virtually from 10 different states currently
#LongCovid
#MECFS
#pwME
Join here:
teams.microsoft.com/l/meetup-joi...
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Join conversation
https://teams.microsoft.com/l/meetup-join/19%3ameeting_YjVhMmU3YTMtMWQwOS00MDI4LWIyNjctYmQzY2Y1NGM2NTdk%40thread.v2/0?context=%7b%22Tid%22%3a%22c576ffd3-5cca-478f-beab-0cc16fa119ee%22%2c%22Oid%22%3a%22ad6ab380-c72c-491e-87c0-30b12c181ae8%22%7d
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My friend,
@maggieboxey.bsky.social
has nearly 50k views on her Millions Missing Ted Talk!!! Let's keep the momentum going! THIS is advocacy in action. Please like, comment and share. Go, Maggie ā£ļø
#mecfs
#longcovid
#millionsmissing
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3 months ago
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Liz Burlingame
#MEAction Network
4 months ago
Check out this amazing TedX talk from
#MEAction
Georgia member, Maggie Boxey! Watch, comment, and like on YouTube!
#pwME
#MECFS
#MyalgicEncephalomyelitis
#disability
#LongCovid
#MillionsMissing
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Liz Burlingame
Moira Donegan
3 months ago
Insane message discipline from this guy.
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Liz Burlingame
Wilhelmina Jenkins
4 months ago
My ME Action GA friends, working hard during
@solveme.bsky.social
ās Advocacy Week to brings critical issues concerning ME/CFS to members of Congress. Love and respect!
#MEForward
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Just completed a meeting with Lizzie N of Rep. Rich McCormick's office as part of
@solveme.bsky.social
Advocacy Week. We are counting on Congress to help support the estimated 9 million Americans suffering with
#MECFS
.
#MEforward
4 months ago
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Liz Burlingame
#9 Dream
4 months ago
I think
#COVID
hasnāt been normalized because on some level people know theyāve been bullshitted about it, know itās more dangerous than is let on, and are secretly terrified. Thatās why people go ādeer in headlightsā when you break the taboo and actually say the word.
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Liz Burlingame
Solve M.E.
4 months ago
Congratulations to Tahlia Ruschioni and
@batemanhornecenter.bsky.social
on their big announcement! Tahlia is an incredible leader and we're thrilled that she is taking the helm as Executive Director.
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Liz Burlingame
Solve M.E.
4 months ago
š§µ 1/ šØ Congress slashed $859 MILLION from a key research program that includes funding for ME/CFS and other critical health conditions. We need your help to restore it.
#MECFS
#CDMRP
#HR3906
solvecfs.quorum.us/campaign/128...
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Liz Burlingame
Wilhelmina Jenkins
4 months ago
This week is
@solveme.bsky.social
ās Advocacy Week when our advocates, including ME Action GAās wonderful advocates, speak with Senators, Representatives and their staffs about the needs of the ME/CFS community. I am no longer healthy enough to participate, but I am so thankful for those who can.
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Liz Burlingame
Chronic Moxie
4 months ago
Itās
@solveme.bsky.social
advocacy week 2025 and my birthday week⦠go here to support:
open.substack.com/pub/maggiebo...
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Liz Burlingame
#MEAction Network
4 months ago
We are sending out our best to those participating in
@solveme.bsky.social
's Advocacy week! We have included their action to ask your rep to restore critical medical research funding by becoming a cosponsor of H.R. 3906. Solve also included NIH Roadmap funding as an ask. We link to our letter.
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Liz Burlingame
Bilbo Yaga
4 months ago
I feast on news of billionaires losing. May the orcas take down another yacht for my dessert.
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I will be joining with my fellow
#MECFS
advocates to talk to my congressional representative about restoring these critical funds.
#GA07
#MEforward
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4 months ago
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The latest substack from
@maggieboxey.bsky.social
is excellent as always! My favorite line, "When public health becomes optional, people with chronic illnesses become disposable." YES!
open.substack.com/pub/maggiebo...
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"Make Better Choices" isn't Public Health Policy
Chronic Illness and the Myth of Individual Health
https://open.substack.com/pub/maggieboxey/p/make-better-choices-isnt-public-health?utm_campaign=post&utm_medium=web
4 months ago
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Liz Burlingame
Kyle Cheney
4 months ago
BREAKING: A federal judge in Massachusetts (the Reagan-appointed William Young) has declared the Trump administration's cuts to NIH grants ā ostensibly over Trump's EOs on gender ideology and DEI ā are "illegal" and "void." He's ordering many grants restored.
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Last day to take action is TODAY! There is no need to get rid of Section 504! People with disabilities deserve better -- all Americans deserve better!
#Section504
#disabilitySOS
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4 months ago
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"When public health becomes optional, people with chronic illnesses become disposable."
@maggieboxey.bsky.social
substack.com/@maggieboxey...
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"Make Better Choices" isn't Public Health Policy
Chronic Illness and the Myth of Individual Health
https://substack.com/@maggieboxey/note/p-165481488?r=qp9f2
4 months ago
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Liz Burlingame
Tom Kindlon
5 months ago
TEDxOjai: I Am One of the Millions Missing
@maggieboxey.bsky.social
www.youtube.com/watch?v=JzKf...
Image taken from Mass ME/CFS & FM Assoc May newsletter
massme.monkeypod.io/mailcoach/we...
#MEcfs
#CFS
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Liz Burlingame
It's ME(Jaime)
4 months ago
"In a context such as the United States, three key factors stand out: easy access to deadly weapons, intense polarization that paints political opponents as treasonous enemies rather than disagreeing compatriots, and incitements to political violence from high-profile public figures."
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In Georgia, attorney general Chris Carr has publicly attacked 504 provisions. I'm appalled that these attacks seem coordinated.
decaturish.com/2025/02/geor...
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4 months ago
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Liz Burlingame
Julia MƩtraux
4 months ago
The Department of Energy is trying to get rid of accessibility requirements for new construction via rulemaking. This unprecedented move, which seems to be illegal, could be the blueprint for other federal agencies to follow. New from me at
@motherjones.com
.
www.motherjones.com/politics/202...
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The Department of Energy is quietly slashing disability rights
"If we don't put a line in the sand here, other agencies will try and do the same.ā
https://www.motherjones.com/politics/2025/06/energy-department-504-federal-disability-rights/
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Liz Burlingame
#MEAction Network
4 months ago
āAdvocacy works,ā said
#MEAction
Minnesota State Chapter Chair, Terri L. Wilder, in an interview with Sick Times. āIām really proud of all the people who showed up. Iām really proud of the people who wrote letters, who called their representatives.ā
@thesicktimes.bsky.social
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Thank you,
@thetattooedjew.com
for talking about disability justice! I especially appreciate you mentioning those with invisible disabilities.
#mecfs
'Closer Look with Rose Scott' on the WABE app! Now at
www.wabe.org
.
bit.ly/44aAa28
Brought to you by your WABE
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Home
Atlantaās independent source for local news and cultural stories. Livestream 90.1 FM, explore our podcasts & video, and stay informed with NPR programming.
http://www.wabe.org/
4 months ago
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Liz Burlingame
Erin Lee
5 months ago
This is astonishing: a brilliant explanation of what
#MECFS
is like, and using ME coping and organizing skills as a model for climate change, connecting it all to the history of disability justice movements. A wonderful start to my day! Go Violet go!
yaleglobalhealthreview.com/2025/05/18/a...
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A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles
BY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raisedā¦
https://yaleglobalhealthreview.com/2025/05/18/a-chronically-ill-earth-covid-organizing-as-a-model-climate-response-in-los-angeles/
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Erin Lee
5 months ago
I donāt know. Itās just a tiny drop in an ocean of suffering. The moms in Gaza. The moms in Ukraine. Their precious children. In history we tell stories about the young, brave fighters who turn the tide. But I just want to know how moms potty train and fight back while their world collapses.
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Erin Lee
5 months ago
Not sure if this will resonate with anyone, but I hope future people who write about this time might include the detail that some of us were disabled moms trying to potty train their kids during all this. Like Iām cleaning poop off the floor and RFK is destroying public health. š§µ
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Liz Burlingame
Wilhelmina Jenkins
5 months ago
Today ME Action GA celebrated
#BlueSunday2025
with a virtual and live gathering featuring the TEDx talk by our own
@maggieboxey.bsky.social
entitled āI Am One of the Millions Missingā. If you havenāt seen it yet, you can watch it at the link below. Itās excellent!
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Billy Hanlon
4 months ago
Salt Lake Tribune: 'For Latter-day Saints afraid of getting sick at church, new guidelines are a breath of fresh air' 'Erin has a condition known as myalgic encephalomyelitis/chronic fatigue syndrome, or ME-CFS'
www.sltrib.com/religion/202...
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For Latter-day Saints afraid of getting sick at church, new guidelines are a breath of fresh air
Experts and church members alike applaud this meaningful, if small, step by the LDS Church toward safeguarding the health of worshippers.
https://www.sltrib.com/religion/2025/06/01/new-lds-guidelines-aim-keep/?utm_campaign=PNIbhd82Lsx6fd0&utm_source=gifted614151719&uid=PNIbhd82Lsx6fd0&fbclid=IwY2xjawKpZY5leHRuA2FlbQIxMQBicmlkETFxRjZIOUxqN0IyRXFHbHpTAR7FKcc1GNQmgzW1pa1XqTGUo2PVZIXi6PVrAYwW8RbuofSuAZyjGeLLhiulNg_aem_jEiXOTY6tf1r8jHohHPhBw
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Erin Lee
4 months ago
Itās been confusing watching health care facilities and churches drop protections for the sick. Shouldnāt these be the safest places? Iām grateful to the LDS church who worked with advocates to create new indoor air quality guidelines, and to the Trib for showing how this affects
#pwME
and
#POTS
.
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Liz Burlingame
It's ME(Jaime)
5 months ago
COVID is surging in Taiwan, meaning it's going to surge here shortly. Wear a mask indoors guys, and get vaccinated if/while you still can.
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Liz Burlingame
People's CDC
5 months ago
Our access to COVID vaccines is under attack. Itās more important than ever to make our voices heard by making public comment to the FDA by May 23 at 11:59 PM EST. Use our template available on our substack at
peoplescdc.substack.com/p/vaccine-ac...
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Liz Burlingame
Unbreaking
5 months ago
š Hi, weāre Unbreaking, a volunteer-run collective working to document our current moment of institutional collapse and its human costsāas well as the pushback and resilience work already underway. We believe this is critical work for building and retaining political agency.
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Liz Burlingame
Fired but Fighting (National Public Health Coalition)
6 months ago
Thank you to
@warnock.senate.gov
and staff for hosting former CDC employees for a round table earlier this week. It was so helpful to discuss some of the issues facing RIF'd employees as well as our concerns over the future of public health.
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Wilhelmina Jenkins
6 months ago
Important to remember the difference between NIH funding and CDC funding. Congress approves CDC funding for specific diseases as a line item. Itās possible that a major push for Congress to restore ME/CFS to the CDC budget could succeed. In the past, our funding has been zeroed out, then restored.
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Liz Burlingame
It's ME(Jaime)
6 months ago
Some bad news for people living with
#MECFS
. Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC. I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet. Let's talk about what a passback is, and what it means for us. š§µš§Ŗ
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