We know that there are a lot of protests happening. Stay safe everyone! We have a protest guide available! www.meaction.net/_files/ugd/b... It includes planning an accessible protest & attending an in person protest when you have ME or similar. #pwME #Protest #MECFS #ChronicIllness

Today @thesicktimes.org: Armani Guerra shares his personal experience with Long COVID, and how it led him to start the first-ever case competition for IACCs at the University of Michigan's business school. thesicktimes.org/2025/10/03/l...

The child of the shooter who attacked my faith community on Sunday is a victim too. He has medically complex, expensive needs and has lost his father. Please help me #DoSomething and raise funds to help him. I am grieving, but we can still make one thing less bad. www.givesendgo.com/helptheSanfo...

A few days out from #UNGA80, I wanted to reflect on the session we took part in and the media responses since. Mount Sinai was one of the 150 organizations that signed the global pledge to advocate for healthy indoor air. The event itself featured four panels of speakers who 1/

This whole thread is so good and relatable. The lack of support, the incredible community of sufferers, the radical reorienting of life and purpose, the incredible suffering at the mild/privileged end of the spectrum and what that implies for the very severe/marginalized end of the spectrum.

The thing about all of this as a ND person and as a person with an infection-associated chronic illness: all of this feels like a bad doctor's visit where the clinician swears that the most important thing is that you as the patient "feel heard" It's not. It's that the patient BE HELPED.

Jimmy Kimmel was taken off the air after our government threatened a private company with retaliation, marking a dark moment for free speech in our nation. More than 400 artists across our nation signed on to say: We refuse to be silenced by those in power.

👉 REPOST CALL TO ACTION!: BOYCOTT T-Mobile! 1. They are hosting Trump's new "Trump Mobile" on their network. 2. They partnered with Elon Musk's Starlink. 3. They lobbied for "Trump's Big Beautiful Bill" 4. They ended DEI for Trump's approval on 2 major acquistions. MORE HERE: tmobileboycott.org

We called Disney+ last night and cancelled our Disney/Hulu/ESPN bundle. I’m a disabled stay-at-home-mom of twin 3-year olds. To say we watched a lot of Mickey Mouse Funhouse, Clubhouse, and Bluey would be an understatement. If even we are cancelling, you know they’re feeling it. #BoycottDisney

RFK Jr, who is causing unprecedented damage, is deeply unpopular with the public. Democrats absolutely need to demand his firing as a basic minimum for supporting any effort to fund the government.

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it's so funny to see America's health insurance companies be like "look. If there's one thing we love it's denying you care. but we ran the numbers - and we cannot BELIEVE we're saying this - and it's cheaper for us to just pay for the vaccines than deal with you going to the ER."

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.

I am leading a discussion tomorrow with a politically diverse group and I am feeling the weight of that task. So we went to a reservoir to watch birds and feel peace. AND WE SAW MUTE SWANS!!!!! They don’t live here. This is our first errant bird sighting! Take that, big scary universe!

The news is bleak, but months ago I planted native spotted bee balm in my yard and this week the flowers finally bloomed and now they’re crawling with giant baby native carpenter bees! So yay! One tiny step towards restoring a healthy ecosystem.

Know your rights, Illinois. Stay safe and stay informed.

Tylenol/autism stuff is bad for many reasons, but it will be used to push the idea that pregnant people shouldn't have pain relief. Women's pain is already dismissed.

I’m attempting to watch this with both 3 year olds underfoot. Twin A is drawing a picture of the Eiffel Tower for me. Twin B is providing a running commentary on my freckles. But the obvious care the panelists have for patients still comes through loud and clear.

We spent a long time today trying to find novovax in states near us that can actually offer covid vaccines. Illinois, if you offer vaccines, we will come. We will spend money in your towns. We’ll visit your petting zoos, baseball stadiums, and outdoor eateries. Please do this.

This is a very powerful letter from a current CDC employee.

We can’t just wait 2~4 years and hope to win free and fair elections. This is something Blue states can and should do now: form a new intrastate body to fund science research. We can’t save science in the whole country, but we can hold onto a large chunk.

❤️ this whole thread. This study was done 3 years before I got sick. The first sign something was wrong was I got slower and sicker during my 4th season of track & field instead of faster and stronger. No one recognized it as the tale-tell sign of PEM. What if school coaches learned to spot this?

Is there a US org that has: 1) a list of k-12 schools with indoor air quality good enough to reduce infectious disease spread? 2) suggestions for what to ask for / how to advocate if your kids’ school doesn’t have tip-top #IAQ? I’m sure it’s out there, but I’m struggling to find it.

The "Big Beautiful Bill" will take away insurance from 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house… #disabled New post on my blog: www.whitneydafoe.com/mecfs/?post=...

I've seen some posts suggesting day drinking to deal with today's news, and I want to offer some suggestions for how to get through today if you don't want to drink, or use drugs. I'm going to suggest these things as someone who hasn't drank or taken drugs in over 9 years. I hope they help.

If you have your own personal story about real-world harms due to the actions of this administration, consider sharing it here. #DoSomething

Stories of real-world harm are the bread and butter of changing minds. Hakeem Jeffries pushing folks to submit theirs to the Democratic caucus: democraticleader.house.gov/shareyourstory

Thank you NYC. I grew up in conservative spaces. As an abuse survivor, the last decade of conservative excuse making for abusers has felt like betrayal. Watching democrats try to prop up Cuomo with Bill Clinton of all people felt like that same betrayal. Thank you for rejecting it. I feel hope.

We need money specifically directed to the ME/CFS Research Roadmap because this is what MAHA will push for us if left to its own devices.

Bill Clinton’s just chilling in his living room, watching ICE kidnappings on tv, when the sex pest election trouble alarm goes off in his kitchen. “Not cuomo,” he says to himself. “Not another member of the brotherhood”

Looks like there are study sites within driving distance for people in Georgia and Alabama.

There are many sites across the US hosting this trial! Contact a study site to determine if you're eligible. More US study sites will be added over the next few months. 🔗 addresslongcovid.com/sites/ 3/

four of Brad Lander's political opponents praising him and speaking out in his defense shows that not only does this crew understand the stakes but also the incentive structure created for candidates by ranked choice voting is dope

We have gathered some current US actions relevant to our community to help as you choose what you can join in. While this list is not exhaustive, we hope it serves as a good starting place. bit.ly/ActionToTake... Remember to #StopRestPace #pwME #LongCovid #MECFS #Disability #ProtectMedicaid

BOYCOTT ALERT! T-Mobile is partnering with Elon Musk’s Starlink. We won’t buy from companies that fund fascism. Sign the petition to tell T-Mobile to dump Starlink. #StarlinkTakedown #TmobileFundsMusk #teslatakedown #MuskMustFall actionnetwork.org/petitions/t-...

My business has used T-Mobile for many years, but I’ll be transferring all lines to a different carrier if they continue to support Elon Musk #MuskMustFall @teslatakedown.com actionnetwork.org/petitions/t-...

I am one of the millions missing. Author, educator and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option. [14 mins] +Transcript tinyurl.com/3hbxkku8

If you are a scientist or a member of the public invested in scientific research, take a look at the Bethesda declaration and consider signing it and sharing it with others. 🧪 www.standupforscience.net/bethesda-dec...

NOTE DEADLINE OF THE 16th! The US Department of Energy s trying to get rid of important rules of Section 504 that will take effect July 15 unless “significant adverse comments” are received by June 16th. Take action with @dredf.bsky.social: dredf.org/action-alert... #disability #pwME #MECFS

you're doing great, boys, now release each other's tax returns

It’s been confusing watching health care facilities and churches drop protections for the sick. Shouldn’t these be the safest places? I’m 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.

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 I’m cleaning poop off the floor and RFK is destroying public health. 🧵

🚨 ACTION ITEMS to stop the FDA from limiting Covid vaccine access: 1. Submit a public comment to the FDA www.regulations.gov/commenton/FD... 2. Contact your elected officials www.usa.gov/elected-offi...

Every time a doctor fails to do their job, an anti-vaxxer influencer gets their devil's tail.

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...

Today ME Action GA celebrated #BlueSunday2025 with a virtual and live gathering featuring the TEDx talk by our own @maggieboxey.bsky.social entitled “I Am One of the Millions Missing”. If you haven’t seen it yet, you can watch it at the link below. It’s excellent!

For a little context here: Christ Church put forward a zoning request to open a shelter for unhoused people - I think it was like 12 beds. The local government of Toms River is responding by trying to eminent domain the church and turn it into a pickleball court

#NEISvoid, what mobility aids or assistive devices do you wish you’d gotten sooner? I’m working through @batemanhornecenter.bsky.social’s #MECFS Crash Survival Guide’s Environment section on p8. I have a wheelchair, shower chair, and many seats around the house.

I've launched fundraisers, but I will also match donations to other ME-supporting 501(c)3's if you send me your donation receipts. I will *double-match* donations with my own donation + employer match. #MEAction: meaction.funraise.org/fundraiser/e... OMF: openmedicinefoundation.crowdchange.co/50084