November is National Family Caregivers Month. #MEAction is bringing you 2 powerful webinars! We will also be sharing social posts & resources focusing on caregiving. Webinar 1: Nov. 16 at 3 pm ET ow.ly/aN5G50XlbZc Webinar 2: Nov. 22 at 3 pm ET ow.ly/JZis50XlbZg #Caregiver #PwME #MECFS

Great work from Rachel Fairbank on the winding story of metformin for #LongCOVID at @thesicktimes.org. Quotes from @jencurtinmd.bsky.social, Rachel Hall Clifford, @chromatowski.bsky.social, Carolyn Bramante, Ed Mills, Melissa Mazur & myself. thesicktimes.org/2025/10/28/m... #MedSky

The destruction of the East Wing is a reminder that America has violated the only check-and-balance that actually ends up mattering: www.doomsdayscenario.co/p/the-only-c...

Really appreciate this perspective. "When leaders gut research or restrict vaccines, they’re not only abandoning long haulers — they’re putting the entire society at risk."

Disability is one of the only minority groups you can join at any time. Everyone thinks they will be the exception. It won’t happen to them. They will “try harder” and overcome. They think we’re failing. It is not a moral failing and very few people will be the exception.

People continue to call COVID advocates’ pleas for masking “unreasonable”. Yet people who’ve already been disabled by COVID have no choice but to live with the “unreasonable” burdens of constant COVID safety. My latest: substack.com/home/post/p-...

my latest investigation for @consumerreports.org is based on months of reporting and 60+ lab tests of leading protein supplements we found that most protein powders and shakes have more lead in one serving than our experts say is safe to have in a day (🧵) www.consumerreports.org/lead/protein...

Multiple threads on the timeline today that all boil down to adults saying with their whole-ass chests "I JUST WANT TO BE ABLE TO HAVE FUN ALL THE TIME AND NOT DEAL WITH THE LESS FUN PARTS OF REALITY" And like yeah, I get it, we all get it. But also, my Frodos, it has indeed happened in our time.

Dear liberals, If you identify as a leftist who believes in intersectional justice & fighting fascism, please wear a mask in public. It’s one small act of solidarity with the millions living with long Covid - and a reminder that caring for others includes protecting their health

“Doing what you can to avoid spreading it to other people” is masking , until we have clean air - and in the meantime , you all need to be advocating for clean air, which none of you are showing the urgency around when you fail to mask. 40%+ of Covid cases are asymp and Covid disables people

"Sometimes things are hard or unfair but reality and science don't care" one million times this I am genuinely sorry this is how the universe works but it is indeed how the universe works, and the sooner more people get hip to this the healthier and happier we collectively all will be.

@joho.bsky.social is a practicing clinician at NYU & a public health hero. In his previous book he documented the unhinged campaign in the early years of COVID to tell us SARSCOV2 was no big deal, we should let people get infected. Now these maniacs are in charge. Read about it here in his new book.

Insightful. “Disabled people, and people with Long COVID, have been calling ourselves canaries in the coal mine for a reason. We may have been harmed first and worst, but we are warning you that COVID is dangerous because our bodies are made of flesh and blood - hearts and brains- just like yours.”

Hey, #MedSky & #SciSky! New text from Elsevier out today, "The Scientific Basis of Fatigue", with multiple chapters on different diseases, including #MECFS, COVID, Parkinson's, stroke and MS. Proud to be the co-author of the #MECFS chapter with authors from Mayo and Bateman-Horne! More info:🧪

Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.

Yesterday, history happened at the UN: For the first time hundreds of orgs signed a global pledge declaring that healthy indoor air is a human right. Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!

Let me be clear. As someone who has been professionally involved with the biodefense / biosecurity sector for nearly 20 years, and has worked on biological risk analysis for Covid-19 since early 2020, reducing one's risk of being infected is not health anxiety. It's just smart.

We have wonderful events to add to your Fall calendar. Register: www.meaction.net/event-list Oct 1 3 pm ET: Q&A with Author Brian Buckbee Oct 9 3 pm ET: Grief is Love by Marisa Renee Lee Oct 21 3 pm ET: Dealing with Grief & Chronic Illness: A Workshop with Marisa Renee Lee #pwME #MECFS

Our current admin hates disabled people 🌈 www.afge.org/article/cdc-...

Here's a Youtube link of Violet Affleck's full speech about COVID and clean air at the United Nations:

“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.” Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!

Today’s autism announcement was just as bad as we feared Trump blamed Tylenol & vaccines for autism They encouraged women to just “tough out” their pain They praised people who don’t “need” meds or vaccines These are eugenicist talking points & they’re devastating to the disability community:

BREAKING: The CDC is temporarily ending remote work. The decision leaves scores of employees in the lurch, even forcing people with disabilities with high-support needs to come into the office. #disability www.statnews.com/2025/09/16/c...

1. Pandemics shape politics and societies. Collective trauma is a powerful force, as is societal reaction to governmental responses to reduce transmission. This is not controversial; humanity experienced it after The Spanish Flu.

Try taking the COVID competency exam yourself, and share it around! Great way to bust myths (and the person who wrote it is an epidemiologist, and well-informed, so it really does). seanmullen.com/covidcompete...

Made it to RECOVER TLC!

Sea Otter (Enhydra lutris): There is so much more to a sea otter than meets the eye. By munching on urchins, it helps kelp forests flourish, and by crunching on crabs, it promotes eelgrass in estuaries. This mammal has the thickest of fur per square inch and is native to Pacific coasts. #seaotter

Today the importance of donations to #MEAction is especially clear. In addition to the brilliant reporting from Scientific Director Jaime Seltzer, we have the announcement of a new staff member for the Minnesota Home Health Navigation Program. To continue this good work, please donate if you can.

Updated public information page on ME/CFS from New Zealand's health authority info.health.nz/conditions-t... Initial impressions from me & a few others are that it is quite good. It probably helps that feedback had been sought. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Great post. One critical point to me is that people are "not making decisions about COVID mitigation downstream of their ideas about disease severity, they’re developing ideas about disease severity downstream of decisions about mitigation."

Essential telehealth provisions are set to expire on September 30th 2025. Congress needs to hear from all of us that telehealth saves lives. Sample script and call instructions: www.meactions.org/telehealth #pwME #telehealth #disability #MyalgicE #LongCovid #congress #MECFS

NEW: In June, ProPublica reported that the FDA has given more than 20 foreign factories a special pass to send drugs to the U.S. even though they were made at plants the agency had banned. Today, we’re publishing a list of those exempted drugs.

Everyone needs to read this This is extremely bad

Today is #SevereMEDay - a day we come together to especially take time to honor the 25 percent living with the most severe form of this disease and remember those who have died from ME. Myalgic encephalomyelitis is a complex chronic disease that presents with symptoms in multiple body systems.

Today, on Severe ME Awareness Day, @thesicktimes.org is proud to publish this piece by @naomiwhitt.bsky.social sharing the story of singer Kara Jane and her new album, released posthumously by her family. thesicktimes.org/2025/08/08/p...

I developed Long Covid in late 2023, and became homebound by summer 2024. As the months drag on, it’s difficult not to feel like my life is on pause while the world moves on without me. My latest personal essay is about the pain of being left behind: www.thegauntlet.news/p/homebound-...

Positive news! The Senate Appropriations bill came out and utterly rejected the Trump cuts to NIH/CDC. #MECFS funding is included in the appropriations language, in part due to @meactnet.bsky.social's battle to include it. A thread 🧵

The primary author of the ADA, Tony Coelho, said this about this piece.

Another great read. “I think, what if community, perhaps, means a little bit more.”

This is going to have lots of exciting news from work on Long Covid and ME/CFS! I hope you’ll tune in if you’re able!

Julia continues to outdo herself with her personal essays. They are so, so well-written. She's also offering a deal on subscriptions--I highly recommend becoming a subscriber! “Take another day from her,” they say, “I have to live my life!” -- That line will be with me for a long time.

"The first thing to consider is that those who have already experienced post-Covid health issues are usually keen to avoid situations where there is a high risk of them being reinfected." Read this as many times as you need to

The news right now is a lot. Even non disabled people are having a hard time keeping up with the atrocities coming at them from every angle. It’s ok to rest. In fact, it’s necessary. If you’re like me and bad at resting, I’ve got you covered! My top tips 👇🏼

Nothing illustrates the all-encompassing social and institutional denial of Covid-19 more keenly than the absolute refusal of many governments to accept that the disease and its many sequelae are a significant causative factor in increased school absenteeism. Wilful blindness.

We are honored to be able to share this speech by Grace- a college student living with ME and Long COVID. We invited Grace to speak at #MillionsMissing as it is so important that young adults affected by ME are heard. Speech: youtu.be/ZgURoWamFNI Take action: www.meactions.org/millionsmiss...

Did y'all know? #MECFS is a disease shrouded in mystery, with 1.5 thousand inexplicable symptoms; this is why you must cast the bones to diagnose. This has led experts to presume that their inability to understand ME/CFS means it is unknowable as fate, god, time, and higher dimensions

A MYSTERIOUS MYSTERY!