Liz Burlingame
@lizmeactga.bsky.social
560 followers 620 following 54 posts
Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.
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lizmeactga.bsky.social
Wait. It's no longer on October 9th?
Reposted by Liz Burlingame
meactnet.bsky.social
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
Laptop showing the Mayo Clinic Proceedings paper and CME "Diagnosis and Management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome" Text above the laptop: ME/CFS CME Available! Until October 1st! Send it to your clinician now. Jaime Seltzer was one of the co-authors. bit.ly/MayoCME8
Reposted by Liz Burlingame
erinmarilee.bsky.social
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.
Reposted by Liz Burlingame
drwambsgans.bsky.social
“No one in the world holds a grudge like me.” OMG this woman might be my platonic soulmate.
exceedhergrasp1.bsky.social
Holy hell, more like this:
“This bill harms me in an unforgivable way. This is a line you don’t cross with me. If you cross it today you’re staying on other side of it, because you have done irreparable harm. You’re doing harm to the body and Nebraska as well. Don’t say hi to me in the hall. Don’t ask me how my weekend was. Don’t walk my desk and ask me anything. Don’t send me Christmas cards. Take me off the list. You don’t know me. We have no relationship. And if you don’t believe me, if you think I’m going to cool down and change my mind? You should believe me. No one in the world holds a grudge like me. And no one in the world cares less about being petty than me. I don’t care. I don’t like you. You aren’t welcome in my space. You aren’t’ a safe person for my child to be around or any child frankly. Don’t believe me? You should.” -- State Sen. Megan Hunt (D)
Reposted by Liz Burlingame
meactnet.bsky.social
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
Reposted by Liz Burlingame
firedbutfighting.bsky.social
It is true HHS cuts to CDC HR are causing real-life problems. 👀Let's be clear, #DOGE DID THIS! 👀

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.
federalnewsnetwork.com
CDC’s HR staff overwhelmed, causing real-life problems for former employees
CDC’s HR staff overwhelmed, causing real-life problems for former employees
Meet Paul (not his real name). He’s much like many federal employees. Paul served in the military for more than five years and then joined the government as a civilian employee. Paul gained critical experience in cybersecurity and eventually made his way to work at the Centers for Disease Control and Prevention. During his 20-plus years in government, Paul was dedicated to his agency’s mission, to his co-workers and to being a part of the broader community. So when Paul chose to leave in February, it was, without a doubt, a tough decision. But what made Paul even angrier than the untenable environment at his agency was how the agency treated him after he decided to leave. Political leaders at the CDC, like at many agencies, made personnel decisions without first understanding the downstream impacts. It took Paul nearly five months to “officially” stop working for the CDC. The agency got rid of a majority of their human resources staff and didn’t empower the remaining employees, who were then overwhelmed by the number of people needing to be out-processed, with the information they needed to make decisions. “The entirety of human resources got gutted. There is only about 50% to 60% of the entire CDC workforce left,” said Paul, who requested anonymity because telling his story would impact his current job in the private sector. “Over the course of the next five months after I left, there was radio silence. I was sending emails only to find out that people retired or took the deferred resignation program (DRP). It was like yelling into an abyss. I finally connected with another executive who happened to be in DC where the new HR director was working. She connected with him and that is what spurred activity and that got me out-processed.” Post-federal employment problems It turns out that someone in HR put Paul’s name in the “action portal,” but never hit the “submit” button. The request for Paul to be out-processed languished in the system for months, causing a host of concerns and potential problems. “There are very real impacts to people like me who are stuck in limbo. First, my federal health benefits are still active, but with no pay, I’m not paying the premiums. That creates a very real risk that I could get a massive bill from the insurance company whenever things finally do get fixed. Also doctors are refusing not to bill my federal insurance as it still shows ‘active,’ creating real issues for me and the family around care,” Paul wrote to Federal News Network in April after nearly two months of trying to get out-processed. “Second, I have over 400 hours of annual leave that should have been paid out as a lump sum payment 6-to-8 weeks after I left federal service. Because I’m not out-processed, not only has that not happened, but the system still shows me accruing new leave, which is going to create more confusion.” Additionally, Paul, who left for a private sector position, couldn’t technically start his new job because he still was officially a CDC employee and there are real concerns about conflicts of interest. Then there were payout issues, insurance confusion and other challenges that went on and on. “One of things I had negotiated with my former boss was a couple of weeks of paid leave. Because you lose sick leave, my boss had agreed to keep me on payroll for two weeks to help bridge gaps of pay and benefits. When they out-processed me, they did so two weeks early with my resignation date in February instead of early March. Now I’m trying to get them to correct that. I need to reach out to get a copy of my time sheet to prove I was on approved paid leave. I had reached out to three people and hadn’t heard back [for months],” Paul said. “Blue Cross Blue Shield refused to turn off my insurance because I was still a federal employee. I’d go to the doctor and they would bill Blue Cross Blue Shield despite me telling them I’m no longer an employee. BCBS could go back and say they aren’t processing that claim and I will have to deal with that fall out. I was at risk of having thousands of dollars in out of pocket costs. I proactively reached out to BCBS and told them I’m not an active employee and they said agency needs to provide documentation and I couldn’t get ahold of anyone to do that.” For the better part of six months, Paul was frustrated and at risk of significant financial and personal consequences. Then the relief came in mid-June when the CDC finally officially out-processed him. “This whole experience doesn’t sour me on the federal government, but what it really highlights how fundamentally disastrous the administration’s cuts were and done without no regard to the human cost of these unilateral actions,” he said. “They went through the government with a chainsaw, and really needed to go with a scalpel. The human suffering that came from these cuts was not thought about. It’s easy for me to compartmentalize and blame people who caused it at the root. And it makes me more angry at those who are truly responsible.” CDC HR staff overwhelmed While Paul’s story ends well, there are hundreds, if not thousands, of other federal employees in similar predicaments at both CDC and across government. Vi Le, a former CDC employee and a volunteer for the American Federation of Government Employees (AFGE), said Paul’s story is all too common. “What has been happening is whenever we reach out to HR, we don’t get a response, or it takes a long time to get a non-response response. They don’t know the answer or they are maybe they are waiting on the Department of Health and Human Services to respond or provide guidance,” Li said. “People don’t know about their retirement packages or what to do if their administrative leave is extended, or if it was a forced retirement versus a voluntary retirement in case of people being a part of a reduction in force. People can’t get answers from HR. It’s been really difficult.” Li said she talked to a former CDC employee who worked in HR, who said the office was overwhelmed with emails from former feds trying to get answers to simple questions, but having to send 10 or 20 separate requests. Li added over the course of the summer the lack of HR employees, particularly experienced ones, is leading to more problems. “There are people who were RIF’ed accidentally because of a mistake on their records. They had the wrong competitive area code. Their office unit wasn’t RIF’ed, but they were,” she said. “AFGE’s rough estimate is about 50 people at the CDC who are in this boat, but HR will not fix it. There’s been escalation in various ways, but they are just not fixing it. People are still RIF’ed even though their offices were not, so now many are stuck.” Abigail Tighe, a former public health advisor with CDC who was fired as a probationary employee, said CDC’s responsiveness really went downhill in April and it has never recovered. “It’s not just the HR folks, but the IT folks too. I still have equipment to return. They asked me to set up an appointment so I asked to do that and never heard back. When I contacted the IT folks, they were overwhelmed too,” said Tighe, who also is a member of AFGE and a founding member of Fired but Fighting, a coalition of RIF’ed and fired CDC employees. As for CDC, the agency still isn’t talking. Multiple emails Federal News Network sent to CDC over two months seeking answers to eight specific questions about how the agency is communicating with and managing former employees went unanswered. Employees still are waiting for answers or solutions to problems. Most would agree if you want to reduce the size of your workforce, do it right, treat people humanely, plan for the changes and make it as seamless as possible. Seven months into this administration’s workforce reduction effort, the chaos has far from settled for many current and former federal employees.The post CDC’s HR staff overwhelmed, causing real-life problems for former employees first appeared on Federal News Network.
federalnewsnetwork.com
Reposted by Liz Burlingame
lenasun.bsky.social
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...
HHS Staff Response to the August 8th Attack — 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...
www.savehhs.org
lizmeactga.bsky.social
YAY! I'm so glad you are well enough to write again. Welcome back! Subscribed ✅
Reposted by Liz Burlingame
julierehmeyer.bsky.social
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...
What the World Asks, What We Give: Energy, Learning, and Suffering
Or: I Bolted My Head Back On. Now I’m Writing Again.
open.substack.com
Reposted by Liz Burlingame
luckytran.com
No, it's not only the US who will suffer from RFK Jr cancelling vaccine research.

1️⃣ You can't just instantly teleport research projects. Cancelling US projects slows global progress.

2️⃣ Preventing pandemics will always be a group project. The US is letting the team down & putting the world at risk.
lizmeactga.bsky.social
I understand you are not claiming credit but it's good news you're sharing at a time when any positive news is worth celebrating. Also you keep ME/CFS relevant. You don't allow people to forget us. And that's a big job. I'm grateful to you for all the work you do.
Reposted by Liz Burlingame
georgetakei.bsky.social
I remember when this happened.
Reposted by Liz Burlingame
exceedhergrasp1.bsky.social
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! 🧪

#NEISvoid
lizmeactga.bsky.social
Just WOW! Thanks for all the advocacy. Thanks for making sure people with #mecfs are not forgotten.
Reposted by Liz Burlingame
valebodi.bsky.social
Good news for pwME used to bad news!
exceedhergrasp1.bsky.social
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! 🧪

#NEISvoid
Reposted by Liz Burlingame
joshtpm.bsky.social
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...
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...
talkingpointsmemo.com
Reposted by Liz Burlingame
emilyrj.bsky.social
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...
Join conversation
teams.microsoft.com
lizmeactga.bsky.social
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 ❣️
#mecfs #longcovid #millionsmissing
maggieboxey.bsky.social
We’re up to 45k views!!! My big crazy dream is to have as many views as there are people living with MEcfs (FIVE to NINE MILLION!!!). Watch, comment & like on YouTube and share on social:https://youtu.be/JzKfi8LOMQU?si=1kP-zGDMtxsXIW8W @meactnet.bsky.social @solveme.bsky.social #momsky #mecfs
I Am One of the Millions Missing | Maggie Boxey | TEDxOjai
YouTube video by TEDx Talks
youtu.be
Reposted by Liz Burlingame
meactnet.bsky.social
Check out this amazing TedX talk from #MEAction Georgia member, Maggie Boxey!

Watch, comment, and like on YouTube!

#pwME #MECFS #MyalgicEncephalomyelitis #disability #LongCovid #MillionsMissing
maggieboxey.bsky.social
We’re up to 45k views!!! My big crazy dream is to have as many views as there are people living with MEcfs (FIVE to NINE MILLION!!!). Watch, comment & like on YouTube and share on social:https://youtu.be/JzKfi8LOMQU?si=1kP-zGDMtxsXIW8W @meactnet.bsky.social @solveme.bsky.social #momsky #mecfs
I Am One of the Millions Missing | Maggie Boxey | TEDxOjai
YouTube video by TEDx Talks
youtu.be
Reposted by Liz Burlingame
moiradonegan.bsky.social
Insane message discipline from this guy.
atrupar.com
Mamdani: "I've already had to start get used to the fact that the president will talk about how I look, how I sound, where I'm from, ultimately bc he wants to distract from what I'm fighting for. I'm fighting for the the very working people he ran a campaign to empower that he has since betrayed."
Reposted by Liz Burlingame
wilhelminaj.bsky.social
My ME Action GA friends, working hard during @solveme.bsky.social’s Advocacy Week to brings critical issues concerning ME/CFS to members of Congress. Love and respect! #MEForward
lizmeactga.bsky.social
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
Screenshot of four women attending a virtual advocacy meeting to discuss the crisis in clinical care for people with ME/CFS.
lizmeactga.bsky.social
Congress has the opportunity to transform the landscape for #MECFS & related diseases w/ bipartisan action. These 4 steps—restoring CDMRP, protecting CDC’s CFS Program, funding the NIH roadmap, & authorizing a new NASEM report — represent an investment in public health, science, and human dignity.
lizmeactga.bsky.social
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
Screenshot of four women attending a virtual advocacy meeting to discuss the crisis in clinical care for people with ME/CFS.
Reposted by Liz Burlingame
gayfabfourfan.bsky.social
I think #COVID hasn’t been normalized because on some level people know they’ve been bullshitted about it, know it’s more dangerous than is let on, and are secretly terrified. That’s why people go “deer in headlights” when you break the taboo and actually say the word.
brownecfm.bsky.social
If Covid was truly societally normalised now - 'just another respiratory virus', to use the common phrase - people wouldn't avoid using the word 'Covid'. The fact the word 'Covid' is taboo in many circles speaks volumes about just how much the disease has *not* been normalised.