There should be infinitely more interest in this medical mystery. How many doctors can even name the phenomenon described below? I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!) #MedSky

By the by, I learned this recently, lest anyone be tempted by @jackschlossberg.bsky.social’s candidacy.

Every time one of these lists pop up on my timeline I can guarantee my NH reps or senators will be on it. 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

Can’t believe the whole country has to suffer through the return of Dickensian childhood diseases because the worst, most ignorant attention-demanders decided other people’s expertise makes them feel bad

I dunno, I've been running >120 km/week on a fairly regular basis since about 2013-2014 (on top of whatever functional walking I do) and this hasn't stopped me from getting both infectious and chronic illnesses. Masking post-2020 has meant I've only been infectious illness sick twice tho lol.

I second this. I adopted it late with #MECFS but wish I had adopted it sooner. Another way to make things easier is to cut your hair. I had long hair initially, then went to an undercut, then buzzed it all of. After each step I thought “why didn’t I do this sooner?”

🧵 Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome www.sciencedirect.com/science/arti... "Severe ME/CFS patients face deep social, medical, and structural exclusion." #SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

Call to action: Congress has extended Telehealth until January 31,2026. This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent. Call now using our call script: www.meaction.net/telehealth #Telehealth #PwME #MECFS #LongCovid

Looking to connect with other #PwME. Anyone use a Garmin tracker to help w/ #pacing? I just got one and I'm figuring out the Body Battery and other functions. I don't trust it not to push me too hard. I mean, it keeps buzzing and telling me to move. #MECFS #LongCovid #MyalgicEncephalomyelitis #ME

@abrokenbattery.bsky.social does such amazing work tracking, archiving, & sharing ME-related media clips #GreatestMEdicalScandal

VICE: “A New Study Could Explain Why Long COVID Lingers for So Many” “Turns out the problem might be microscopic—and everywhere.” www.vice.com/en/article/a...

I’m stuck in the classic chronic illness conundrum I call: mutually assured destruction. It begins with #MECFS causing post-exertional malaise (PEM) and making me more bedbound. Being more bedbound sets off joint and muscle pain thanks to #hEDS / #HSD Need to stretch/move to ⬇️ pain, but…

1️⃣ A new Nature Communications study from the RECOVER-Adult consortium tracks how #LongCovid symptoms evolve over 15 months in 3,659 adults infected in the Omicron era. This isn’t just “who has LC” it’s about what path the symptoms take.

Post-exertional malaise is the cardinal symptom of #ME. In people with #severeME, even chewing food can trigger post-exertional malaise. #UKMAW2025 #EndMalnutritionInME

🚨New survey alert 🚨 The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME All information can be found on the landing page here. www.physiosforme.com/hcpwithmesur...

Just a note to say: if you hear anything about #MECFS or #PEM and related on radio or TV, let me know and I’ll do my best to record it. I missed the Celebrity Catchphrase clip and don’t want to miss any more. And if you have any old clips on VHS, I’ll try and get them digitised.

If you use Firefox, and weren't aware, there's now AI stuff baked in. 'Remove chatbot' gets rid of it, but no doubt it's lurking under the hood somewhere. It's quite mad how the tech companies force this stuff on us when nobody has asked for it.

I mean. It's just. "Quiet, piggy." How. How does. The president. Of the United States of America.

Before she died, Alice Wong was kind enough to give me an interview for my book, Who Wants Normal? Here’s her wonderful advice to disabled women (from the Guardian extract): www.theguardian.com/world/2025/a...

Your last saved meme is your moral philosophy

In less than 2 weeks, this has already filled more than 500 of 1000 slots, which is fantastic (the faster enrollment’s complete, the sooner results read out). If you have any offline friends w/Long Covid, please do share so they hear about it! It’s a 50% chance to try an expensive med for free.

Painsomnia + boredom = lots of posts

I needed a laugh today then my husband sent this text. For context Finn is a sweet, slightly derpy dachshund with a penchant for destroying blankets. The blankets end up looking like swiss cheese. Hence his ability to get his head stuck in one.

1) This study from Cornell University tested more than 6000 proteins before and after two exercise tests. It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.

Consumed by grief, isolation, and the relentlessness of long covid My house is a disaster My big strong kitty is dying Can't fix my car Can't fix my house Every time I open my eyes the nightmare worsens Entombed in my room while the world looks away 2073 days No end in sight #LongCovid

Combine this with SARS-CoV-2, a virus well known for causing postural orthostatic tachycardia syndrome (POTS), and what could go wrong? 🫠🫠🫠 I wonder if the airlines are factoring in the cost of diverted flights for medical emergencies 🤔

“Does it really matter when you sleep?” That’s what my husband asked me. He’d seen me struggle with insomnia our whole marriage, but #MECFS upped the ante. Fractured, unrefreshing sleep night after night. “Maybe you should stop fighting it.” 1/

Like freaking clockwork. Time for bed and my coat hanger pain flares up 🤦🏻‍♀️ If past patterns hold this means I won’t fall asleep until sometime after 5 am 🫠

For those learning about the devastating loss of Alice Wong or those newly discovering this fierce disability activist, you can get to know her through her own words here, (via @emilybeitiks.bsky.social) disabilityvisibilityproject.com/author/alwon...

Some abled parents of disabled people are the most violent ableists. They use their children as tools to demonstrate their heroism in shouldering the burden of taking care of a disabled person, think they’re incapable of ableism, and say the experience of a caretaker is the same as being disabled.

While Alice has become an ancestor, her work continues! If you want to share her wisdom with others, you can purchase copies of her books for your local library, share her dazzling array of digital media from DVP, or donate to her legacy fund: www.gofundme.com/f/alice-wong...

Alice Wong taught us that disabled people don’t just leave memories behind—they leave infrastructure. Lineages of care. Methods of collectivity, survival. She named the connective tissue that holds our communities together, even across death, even across the losses that come too fast and too often.

It would be a very good day to donate, in honor of the incredible Alice Wong (@sfdirewolf.bsky.social). chuffed.org/project/crip...

Respect Alice Wong’s call here: “When I am in public spaces and see most people unmasked either because they think the virus is a hoax, that masking is virtue signaling & a sign of weakness, aren't thinking about it, or that they simply don’t care, I feel like an expendable burden not worth saving.”

I have not wanted to believe this for the 30 min since announced. Alice Wong was at the top of a very short list of ppl who truly made the world a better place; a fierce oracle who inspired, rallied, personally supported in dark moments +spoke up for so many of us in the disabled community. 💔 RIP

Tapping the sign: "Staying alive is a lot of work for a disabled person in an ableist society."—Alice Wong in the Introduction to Disability Visibility

Our beloved Alice Wong has joined the ancestors. It was one of the great honors of my life to call Alice my friend, co-author & co-conspirator. She was a true genius, a force of nature the likes of which the world has never seen before. I love you, Alice, and am equal parts grateful and devastated

Diversity has always been a problem in ME/CFS groups. In my opinion there are a few reasons for that, the primary one being the lack of outreach to the medical community serving Black people to let them know that this is a serious illness that they should look for in their patients.

Leslie recently passed away, he was dedicated in educating people about the dangers of Covid and Long Covid, a vibrant and caring person who helped so many, also as an educator and journalist, he will be missed Please donate to his GFM: www.gofundme.com/f/lleeiii

The weirdest thing about this discourse is that states with shorter school closures have the same amount of learning loss! I keep waiting for all the punditry on this to catch up with basic facts

when faculty complain about students, I want to ask them if they factor in pandemic trauma + COVID itself. Then I recall that we are all pretending that the pandemic is over, and no one needs to worry about COVID anymore, and that I might explode if I have to talk about this once more and keep quiet

wearing a mask in, at the very least, public indoor spaces (grocery stores, pharmacies, transit, healthcare) is one of the most basic forms of allyship you can offer disabled people you’re forced share space with.

What the husband @mjowen174.bsky.social says is true. It’s been a bit quiet in my shop lately. If you’re looking for #Christmas cards and gifts please have a look at my website. gailmyerscough.co.uk A repost would be lovely too.

still trying to get this covered. I really appreciate visibility and contributions to that end. you keep me safe. #helpsky #neisvoid #maboost #signalboost 💸💕

Let's pay back her generosity with lots of holiday orders. I can personally attest that her products make EXCELLENT gifts—my mom is still using her Galaxy wrist brace something like 3 years later!

Google has now admitted that they will tap into users' personal data within Gmail and Drive in order for their upcoming AI search to "be more helpful". For years, Google has advertised their services as "encrypted" and "secure", which begs the question: are they really? 1/5 🧵

If you’ve never thought through what happens to disabled people in emergency situations like a fire, this thread is very much worth your time.

👀 www.healthrising.org/blog/2025/11...

This was the virus that kicked off my myalgic encephalomyelitis (ME) aka #MECFS It’s also been linked to MS and lymphoma. Not good.