Alexis M. 🎃

@turnoftheshrew

begrudgingly online for chronic illness research & disability justice community. living meaningfully & unapologetically as a hermit against my will.

560 Folgt1.652 Follower418 Posts

Bluesky

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Alexis M. 🎃@turnoftheshrew· 5d

New preprint by some big names in #EDS #MECFS #LongCovid #MESpine spaces proposing new framework/spectrum called Neuro-EDS. (Makes total sense! We all know there’s so much overlap, so should the medical field!) www.preprints.org/manuscript/2...

Neuro-EDS
A CLINICAL FRAMEWORK-NOT A NEW DISEASE.
Altered Connective Tissue Biology
Shared Biomechanical, Physiologic & Inflammatory Mechanisms Multiple Neurologic Manifestations. These seemingly disparate neurological disorders frequently cluster in patients with hEDS/HSD and related connective tissue disorders.
A REPRODUCIBLE NEUROLOGIC PHENOTYPE
Different Diagnoses. Same Patient

CRANIOSPINAL MANIFESTATIONS
• Craniocervical instability • Chiari I malformation / Complex Chiari spectrum
• Syringomyelia
• Tethered cord syndrome
• Intracranial hypertension
• Intracranial hypotension / spontaneous CSF leaks
• Internal jugular venous outflow
• Eagle syndrome
disorders.
NEURO-AUTONOMIC &
INFLAMMATORY MANIFESTATIONS
• POTS / Dysautonomia
• Cognitive dysfunction
Small fiber neuropathy
• Gastrointestinal dysmotility • Neurogenic bladder • MCAS
• ME/CFS-like illness

Alexis M. 🎃@turnoftheshrew· 19d

This photography print by Whitney Dafoe sits on my bookshelves in the room in which I spend most of my time. For me it evokes grief & time, the gloom & haze of illness, hope of sun peeking through, the power of nature in a world that continually goes on, a pathway into the unknown. #SevereMEDay

Colored photograph inside a white square frame of a brown railed pathway extending into a foggy horizon, the sun high in the grey sky off to the right. Greenery surrounds the pathway. All colors are muted. The faint reflection of a white woman’s arms and hands can be seen taking a photograph of this photograph.

Alexis M. 🎃@turnoftheshrew· May 17

#BlueSunday2026 #TeaPartyForME2026 (My tea is iced this year. 🥵) supporting Open Medicine Foundation @openmedf.bsky.social + monthly support to Patient Led @patientled.bsky.social

A white person’s hand holding a glass of iced tea outside; it is sunny and there are various green bushes, one with pink flowers, and a green lawn in the background

Alexis M. 🎃@turnoftheshrew· Dec 31

Mood + treat/cure #MECFS #LongCovid obviously 🥂 ✨ (credit @sarah_thompson25 tiktok)

New Year’s resolutions: complain more, be meaner, add more whimsy, give into my sweet tooth, get hotter, craft, become a witch

Alexis M. 🎃@turnoftheshrew· Dec 18

Medical codes of diagnoses common in our community that doctors should be using for billing & documentation. Whenever a study is done on prevalence of these diseases using electronic health records, these codes matter. If we aren’t coded, we aren’t counted. #LongCovid #MECFS #POTS #EDS

U09.9 post Covid conditions unspecified
G90.A POTS
G93.32 ME/CFS
Q79.60 Ehlers-Danlos syndrome unspecified
M35.7 hypermobility syndrome

Alexis M. 🎃@turnoftheshrew· Dec 5

Orangish yellow crap apple berries covered in snow on their branches

Alexis M. 🎃@turnoftheshrew· Oct 31

It does not make financial sense for everyone so you’ll need to check your personal circumstances & how it works in your state. You can save up to $100k w/o it affecting #SSI or #Medicaid & it grows tax free. Others can gift $ into it. The $ can be used in the following ways: #pwME #chronicillness

Living expenses, education, housing, transportation, employment, training and support, assistive technology, personal support services, health prevention and wellness, financial management, administrative services, legal fees, oversight and monitoring

Alexis M. 🎃@turnoftheshrew· Oct 4

I’ve grown so weary of healthy people reminding sick people to have hope. How do they think we’ve survived it all, many of us alone? We are already far more resilient than they can understand. Hope is not a balm for the reality of pain, it is a witness to it. #pwME #LongCovid #chronicillness #MECFS

Screenshot of a tweet by Matthew @CrowsFault: People speak of hope as if it is this delicate, ephemeral thing made of whispers and spiders webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go. (Posted on March 10, 2022 at 2:21 PM.)

Alexis M. 🎃@turnoftheshrew· Jul 17

Mood, for the last 5 years and hopefully forever.

May we stop seeing ourselves through the eyes of people who never saw us. Shane Steele

Alexis M. 🎃@turnoftheshrew· Jun 29

Keep going. 🌻

A blooming sunflower, not yet fully opened in the foreground. Behind it and out of focus a wooden fencepost and grass, and in the background out of focus green trees and thin clouds at dusk.

Alexis M. 🎃@turnoftheshrew· May 12

#MillionsMissing 2025 is more dire than ever: tens of millions suffering horrifically w/o treatments, many w/o any meaningful healthcare at all, & a government that strips more funding, policy & protections away each day. #DisabilitySOS #MECFS #LongCovid #MyalgicEncephalomyelitis #pwME

Art of lady liberty drowning in red water, the torch and crown visible above water’s surface, face and neck and arm visible under the water.
Text says: #millionsmissing SOS #MEaction May 12, 2025 protest. Washington DC and from home. 2025 #millions missing. Art signed in right corner by Jessica kaushansky 2025

Alexis M. 🎃@turnoftheshrew· May 2

Ok so, when I saw these other two and the time period I immediately thought…

Xena, Joxer and Gabrielle from Xena Warrior Princess

Alexis M. 🎃@turnoftheshrew· Dec 31

May 2025 bring us joy, safety, comfort, rest… and clinical trials that correctly measure, analyze, and demonstrate the horror that is #PEM #postexertionalmalaise. Cheers! 🥂 🎉 🎆 #LongCovid #pwME