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Holly L (First Grace28 at the other place) she/her

@hollyl.bsky.social

-personal account, opinions my own -Interested in #MyalgicEncephalomyelitis #ChronicIlness #DisabilityJustice #Spoonie & politics (by necessity not for fun). I ❤️ reading 📚 beach ⛱️ fall 🍂nature 🌳 #pwME #StillSickStillFighting #LongCovid #MEAction

95 Posts163 Follower512 Folgt
Wilhelmina Jenkins@wilhelminaj.bsky.social · last wk.

Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.)

#MEAction Network@meactnet.bsky.social · 6d ago

A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME

Emily Johnson@emilyrj.bsky.social · last wk.

It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation) It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful My neurosurgery follow-up is soon, please donate and share: www.gofundme.com/f/help-emily...

Holly L (First Grace28 at the other place) she/her@hollyl.bsky.social · last wk.

So powerful! We have a little bit of everything! #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #spoonie #disability

#MEAction Network@meactnet.bsky.social · last wk.

In honor of #SevereMEday, #MEAction is honored to share the Severe ME Artists Project 2026! Over 100 of you submitted photos, drawings, writing, and videos of your work! We are thrilled to share so many amazing and powerful pieces of artwork. https://ow.ly/FSXw50ZxJTC #SevereME #art #artist

Empty bench in front of a frame (like you would find at an art gallery)/ Framed sign has text: Severe ME Artists Project 2026. Under the frame is a QR code and website link bit.ly/SMEart2026,
Holly L (First Grace28 at the other place) she/her@hollyl.bsky.social · 4w ago

Definitely a hero to me for the massive deep dives he has been doing for the past year! It's a lot! #Medicaid #MECFS #LongCovid #MyalgicEncephalomyelitis #DisabilityJustice #disability

#MEAction Network@meactnet.bsky.social · 4w ago

Not all heroes wear capes- some wear headphones & attend presentations to make sure we have the most up-to-date information! US Advocacy Director, Ben HsuBorger, is attending multiple presentations on CMS work requirements today. Submit your comment to CMS by July 31! https://ow.ly/TLas50Zrw9y

Photo of Ben Hsuborger (white man with brown hair and beard wearing headphones, gray tee, and glasses) holding a laptop sitting in a tan chair with a slight smile for the camera. Graphic in top corner says not all heroes wear capes. Text: Ben Hsuborger is attending multiple presentations regarding Medicaid work requirements today to make sure we have the most up-to-date info!
Holly L (First Grace28 at the other place) she/her@hollyl.bsky.social · 2mo ago

I chose to subscribe for one year with a small additional donation to @motherjones.com. I appreciate quality journalism & believe it is more critical than ever. But I specifically chose Mother Jones due to their disability reporting with @juliametraux.bsky.social. #disability #pwME

Mother Jones@motherjones.com · 2mo ago

This week only, every donation will be DOUBLED up to $50,000. That means every dollar you give will be matched 1-for-1, for twice the power. Consider doubling your impact today. We can’t do this work without you! bit.ly/4uZEHkv

Wilhelmina Jenkins@wilhelminaj.bsky.social · 3mo ago

You will see me in the post below and, yes, I am medically frail like millions of pwME. I live between bed and bathroom, fearful that any life event could disrupt my tiny life. If we didn’t laugh a bit, we would have to cry. But after a laugh, make sure that you have signed the letter to HHS below.

#MEAction Network@meactnet.bsky.social · 3mo ago

Call ME Frail but protect our healthcare. ME must be classified as a “medically frail” condition. Medicaid work requirements threaten to harm our community unless ME/CFS & Long Covid are put into this category of listed diseases. www.meaction.net/savemedicaid #FrailAndFurious #MillionsMissing

Pillow Writers@pillowwriters.bsky.social · 3mo ago

“Imagine you must operate on 15% energy, at your best. If you go into the red it can take days, weeks or months to recover, and only to 15%.” Úna, Ireland, living with myalgic encephalomyelitis since 1982

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Casey Doherty@caseydoherty.bsky.social · 3mo ago

Join @meactnet.bsky.social's campaign to protect Medicaid access for people with ME and Long COVID (and all members of the disability community): actionnetwork.org/petitions/fr... #MillionsMissing

Protect Medicaid for People with ME/CFS and Long COVID

New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people o...

actionnetwork.org

Casey Doherty@caseydoherty.bsky.social · 3mo ago

I joined @meactnet.bsky.social on the steps of the Department of Health and Human Services yesterday to fight for Medicaid access/expansion and against harmful work requirements that will make our community sicker. #MillionsMissing

Casey, a white woman with dark blonde hair wearing jeans and a red shirt that says “Still Sick Still Fighting,” stands and speaks into a microphone. Behind her are government buildings, flags, and blue sky.