-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
Holly L (First Grace28 at the other place) she/her
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Declaratives
My head pounds.
My body aches.
My limbs hurt.
My joints scream.
My spirit rallies.
My soul endures.
My life persists.
#MillionsMissing #FrailAndFurious millionsmissing.org #pwME #LongCovid #MECFS
“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
At #MillionsMissing, we made a significant breakthrough. The Office of the Surgeon General has committed to advocating for our community. This is a meaningful step toward the federal recognition that people with #MECFS & #LongCOVID deserve.
More info:
https://ow.ly/bSIV50Z2qmL
We showed up in front the U.S. Department of Health and Human Services today, joined by Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health - Policy and Chief of Staff/Senior Advisor to Office of the Surgeon General.
#MillionsMissing #FrailAndFurious #WorldMEday
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.
If you are like me and could not manage to share yesterday, join in whenever you can.
Right now, any funds going to advocacy via @meactnet.bsky.social are matched!
@eha.sh is also offering matching this May for @meactnet.bsky.social & Solve & OMF.
So your gift can go further!
#MillionsMissing
I donated to @meactnet.bsky.social in honor if @meactionnc.bsky.social gathering & through Baby Deer Bakery fundraiser. I donated so a #pwME in GA could get treats. Those funds go to @meactnet.bsky.social & @solveme.bsky.social.
I also donated to a person w #SevereME for mutual aid.
I am late with my #BlueSunday2026 post! I stopped in @meactionnc.bsky.social lovely virtual gathering but was too unwell to do the tea & treat. So I am sharing a picture of the blue sky I saw 2 weeks ago. (Once you spend years w/o seeing sky you cherish every time you see it!)
#TeaPartyForME2026
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
GREAT NEWS! We've secured a $44k grant (half of what we need) to launch Canary Corps, our not-yet-launched national peer-support program to help people with ME, Long COVID, & related conditions keep their Medicaid coverage. We need the full $88k to launch. https://ow.ly/zk1K50Z2r2f
Diana Leigh Waldron
Pillow Writers
#MEAction Network
#MEAction Network
Holly L (First Grace28 at the other place) she/her
Holly L (First Grace28 at the other place) she/her
Wilhelmina Jenkins
Holly L (First Grace28 at the other place) she/her
#MEAction Network
Casey Doherty
#MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!
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
