Profile avatar
melindaiscomplex.bsky.social
My body has given up but I haven't... ME/CFS Patient Leader & Complex-Chronic Disease Advocate (on hiatus). Co-founder #MEAction Maryland. Bed-tethered disabled by severe ME & LC & comorbids. Orioles/Ravens/Caps fan. She/her
89 posts 1,783 followers 1,926 following
Prolific Poster

WTF!!! Fucking disgusting. Call and email your gop reptiles!!! act.indivisible.org/sign/no-cutt...

“I don't think people should be taking ... medical advice from me”, said RFK Jr. during his first hearing this morning. I agree 100%, but since this the case, he should be removed from office by close of business today. www.axios.com/2025/05/14/r...

At a House testimony, RFK Jr said “I don't think people should be taking ... medical advice from me.” Agreed. And to ensure no one listens to his advice, he should step down from his leadership of Health and Human Services.

HANDS OFF OUR MEDICAID. HANDS OFF OUR HEALTH CARE. HANDS OFF OUR HUMAN RIGHTS.

Reminder to Democrats: This isn't *a distraction*. They are eroding the rule of law, and you can talk about that as well as the price of eggs.

It's #MEAwarenessMonth - learn about this common condition that can affect anyone www.omf.ngo/what-is-mecfs/ & actions you can take right now to help meactions.org

@vanhollen.senate.gov please support ME/CFS research that protects our veterans and boosts public health. Sign @edmarkey.bsky.social's Dear Colleague Letters to fund the CDC and DoD programs #pwME #SaveOurScience

@vanhollen.senate.gov 🚨 Protect the ONLY federal program dedicated to ME/CFS research! The CDC CFS Program is at risk of being cut. Please sign @edmarkey.bsky.social's LHHS Dear Colleague Letter to preserve it #SaveCDCCFSProgram #pwME

@alsobrooks.senate.gov please support ME/CFS research that protects our veterans and boosts public health. Sign @markey.senate.gov's Dear Colleague Letters to fund the CDC and DoD programs #pwME #SaveOurScience

@repjohnnyo.bsky.social will you support restoring the $859 million cut from CDMRP funding? Signing the Carson-Fitzpatrick Letter would restore critical funding for military health. #RestoreOurResearch #pwME

The “crip tax” is exactly why many of us can’t stockpile or prep. We have no reserve funds. We spend every penny just trying to survive, and most of it on medically necessary supplies that we can’t go without. Tariffs and economic instability are terrifying when you’re disabled.

Now they are gutting NSF. This is radical destruction. The Trump goal is to end scientific research in America. Our sense is that few people, even inside the government, have actually grappled with this reality.

We are fighting for funding for the ME/CFS Research Roadmap. We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap. Sign our new letter now: bit.ly/MEcfsRoadmap The more signatures we gather, the louder our call for action. #PwME #MECFS #NIH

Under the House bill, “ICE would become more powerful than every other federal law enforcement agency,” @reichlinmelnick.bsky.social writes, “allowing for a level of immigration enforcement that has no historical precedent.”

This is a great paper on the use of art in activism by Casey Doherty with #MEAction and its work in the arts as a focus. Includes a lot of useful resources as well. Nice social sciences work! 🧪 #disability #activism ojs.scholarsportal.info/ontariotechu...

I'll be at Washington DC next week speaking at #MillionsMissing. Hope to see you there!

Sign on, to help save public broadcasting, folks! Our usual advocacy tag: #DoSomething

Protests are great, but we also need to strengthen community supports to protect disabled & elderly people who can’t flee, fight or prep. Start a community garden Do groceries, clean or check on those in need Donate to mask blocs (and wear a mask!) Provide rides, companionship & in person support

Republicans in Congress need to know that as more and more Americans die of vaccine-preventable disease, it will be their fault. There will be no escaping the results of the public health malpractice they are currently practicing. There will be no explanation other than RFK Jr.

"However, for disabled people, the labor market has never really worked and continues to showcase the persistence of systemic ableism." www.americanprogress.org/article/revo...

We have so many amazing artists & we are excited to see the art shared for this year's #MIllionsMissing #DIsabilitySOS! We have samples of art from past #MillionsMissing in our toolkits: www.meactions.org/millionsmiss... Thanks to @hospmom.bsky.social & The French Femme for these examples! #pwME

Maryland electeds - #TeamMaryland should join! @alsobrooks.senate.gov @vanhollen.senate.gov @repjohnnyo.bsky.social @raskin.house.gov @repaprildelaney.bsky.social @elfreth.house.gov @ivey.house.gov @repkweisimfume.bsky.social @hoyer.house.gov

"A federal judge is raising alarms that the Trump administration deported a two-year-old U.S. citizen to Honduras with “no meaningful process,” even as the child’s father was frantically petitioning the courts to keep her in the country." www.politico.com/news/2025/04...

Our US Advocacy Director makes an impassioned plea - Call your members of congress and tell them NOT TO CUT MEDICAID! Medicaid keeps so many people with ME alive! Congress is aiming for a hearing on Medicaid by the week of May 5th and a house vote by Memorial Day. www.meactions.org/medicaid

@repjohnnyo.bsky.social ME/CFS affects veterans, kids, and working Americans across the country. The CDC’s program is efficient and worth preserving. Please protect this vital health program in FY26. #PreserveTheCFSProgram

@vanhollen.senate.gov The CDC’s ME/CFS program tracks illness, educates doctors, and prevents waste through agency coordination. Cutting it would set back public health & hurt millions. Please protect it in FY26. #PreserveTheCFSProgram

@alsobrooks.senate.gov From school nurses to medical providers, the CDC’s ME/CFS program quietly supports millions living with chronic illness. It’s effective, efficient, and worth defending. Please fund it in FY26. #PreserveTheCFSprogram

No words will come to me ... @exceedhergrasp1.bsky.social

what they're gonna do is they're going to try to steal our country's priceless art collection

Pretty cruel. An R01 grant takes months of work to develop. If NIH won't accept these grants and ALSO won't tell people they aren't accepting them, that's highly unethical. I know a lot of unethical things are going on right now, but I'm not down to normalize them. This sucks, and it's wrong.

EXCLUSIVE: DOGE is knitting together data from the Department of Homeland Security, Social Security Administration, and IRS that could create a surveillance tool of unprecedented scope.

always a good sign when the guy with the nuclear codes is being manipulated elder-abuse-style by his scheming henchmen

W T F 🤬

Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️. #GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME

W T F 🤬

@exceedhergrasp1.bsky.social thinking maybe this could possibly show brain inflammation in ME? www.threads.net/@braininflam...

Well worth reading. Short summary: Not the fucking Flu 🙏🏻 doi.org/10.1093/jimm...

ALERT: SB 299 is back on the agenda. It removes exemptions to the state’s ban on gender-affirming care for trans kids, meaning that even if a kid is at risk for suicide, this lifesaving care is still banned. The bill is on the House Health agenda today at 3:30. Demand the committee vote NO.

The cruelty is the point. Now get out there and join a local protest and don’t stop until Trump is removed.

The entire staff of the Low Income Home Energy Assistance Program (LIHEAP) has been fired today. LIHEAP helps low-income elderly with heating support and air conditioning in hot places like Texas. People will die from this.

I also want to add that, in addition to all this, Vance's puppeteer Peter Thiel owns Palantir, which has been testing surveillance and metadata-scraping predictive targeting algorithms on Palestine for more than a decade. Facial recognition and information tracking coupled with all this is Bad.

New Maryland Senator Alsobrooks just finished holding a series of town halls, listening to constituents across the state. She introduced the Tariff Transparency Act to make clear what the Trump tariffs are costing the American people and businesses. We deserve the truth!

This could affect my home care that is already minimal 🤬