Jes B G
@jesbg.bsky.social
Chronically Creative Person living with ME, POTS, hEDS, MCAS +
No words
Some bad news for people living with #MECFS.
Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC.
I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet.
Let's talk about what a passback is, and what it means for us. 🧵🧪
Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC.
I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet.
Let's talk about what a passback is, and what it means for us. 🧵🧪
April 17, 2025 at 10:47 PM
No words
A few of us at the #handsoff protest this weekend in Atlanta, made the @maddow.msnbc.com cut. That’s the back of me in my wheelchair and my sign & that’s @erinmarilee.bsky.social with the church lady sign!
April 8, 2025 at 5:21 PM
A few of us at the #handsoff protest this weekend in Atlanta, made the @maddow.msnbc.com cut. That’s the back of me in my wheelchair and my sign & that’s @erinmarilee.bsky.social with the church lady sign!
We were calling out the cry at the hands off protest this weekend. My sign is cut off, but it says “SOS #millionsmissing”
April 8, 2025 at 5:18 PM
We were calling out the cry at the hands off protest this weekend. My sign is cut off, but it says “SOS #millionsmissing”
Thank you @erinmarilee.bsky.social for introducing me to this bonkers-ness. I love that I get to participate in the obsessive refreshing. This year seems even more bonkers than the last couple years!?!
Four drops so far and we know more are coming. The thing is, they are coming back to camp from all directions and in some cases cannot describe where they were. This is old school Barkley. #bm100
March 19, 2025 at 12:40 AM
Thank you @erinmarilee.bsky.social for introducing me to this bonkers-ness. I love that I get to participate in the obsessive refreshing. This year seems even more bonkers than the last couple years!?!
I will be doing this AGAIN. I’m not sure how much response we can get in these politically turbulent times, but I will advocate with everything I have. 💪🏽
Registration is now open for Solve’s Virtual Advocacy Week, June 23-27, 2025! Make your voice heard – help educate Congress about ME/CFS and associated conditions. Register by May 12 at MEForward.org.
#MEForward
#MEForward
March 14, 2025 at 1:35 PM
I will be doing this AGAIN. I’m not sure how much response we can get in these politically turbulent times, but I will advocate with everything I have. 💪🏽
Last page in the sketchbook. Most of the book has been created in this bed. 2019-2025… I’ll post more pics once I’m completely done. #artjournaling
March 14, 2025 at 3:34 AM
Last page in the sketchbook. Most of the book has been created in this bed. 2019-2025… I’ll post more pics once I’m completely done. #artjournaling
Thank you Ben!!!
Ben HsuBorger, #MEAction’s US Advocacy Director, shares why he joined the recent Stand Up for Science Rally. See article: www.meaction.net/2025/03/12/w...
#pwME #MECFS #NIH #StandUpForScience #longCovid
#pwME #MECFS #NIH #StandUpForScience #longCovid
March 13, 2025 at 8:40 PM
Thank you Ben!!!
Of course they’re sneaking cuts everywhere. It’s hard to keep up. Thank you @solveme.bsky.social for staying on top of things and getting the word out!
URGENT! The Senate is considering a 57% cut to DoD's Congressionally Directed Medical Research Program (CDMRP)--including $ for a program that provides millions of research dollars for #MECFS.
Click here to tell your Senators no cuts, full funding! ow.ly/MZLT50Vfix5
#MEAwarenessHour
Click here to tell your Senators no cuts, full funding! ow.ly/MZLT50Vfix5
#MEAwarenessHour
March 13, 2025 at 5:17 PM
Of course they’re sneaking cuts everywhere. It’s hard to keep up. Thank you @solveme.bsky.social for staying on top of things and getting the word out!
Reposted by Jes B G
A reminder for these times.
March 1, 2025 at 10:24 PM
A reminder for these times.
Reposted by Jes B G
While myalgic encephalomyelitis (ME/CFS) is not a rare disease by the numbers, some of us have a co-morbidity that is a rare disease & we want to support our fellow disease/ disability community. A disease is rare when it affects fewer than 1 in 2000 people.
#RareDiseaseDay
#RareDiseaseDay
February 28, 2025 at 6:39 PM
While myalgic encephalomyelitis (ME/CFS) is not a rare disease by the numbers, some of us have a co-morbidity that is a rare disease & we want to support our fellow disease/ disability community. A disease is rare when it affects fewer than 1 in 2000 people.
#RareDiseaseDay
#RareDiseaseDay
The purry guy on my lap. It’s a severe POTS(y) day. I can’t sit up/stand, so at least I have company…
February 16, 2025 at 3:58 PM
The purry guy on my lap. It’s a severe POTS(y) day. I can’t sit up/stand, so at least I have company…
For Valentine’s Day, we were just able to squeeze in seeing Georgia O’Keeffe’s show called My New Yorks before it left the High Museum of Art. It was amazing to see some of her lesser known paintings in person. I think I’ve seen a few of them over the years, but not in a collection like this!!!
February 15, 2025 at 8:03 PM
For Valentine’s Day, we were just able to squeeze in seeing Georgia O’Keeffe’s show called My New Yorks before it left the High Museum of Art. It was amazing to see some of her lesser known paintings in person. I think I’ve seen a few of them over the years, but not in a collection like this!!!
Add this to extended family members suggesting mushrooms will cure you, without even asking about you or your spouse or child… it’s hard to even function!
February 13, 2025 at 8:30 PM
Add this to extended family members suggesting mushrooms will cure you, without even asking about you or your spouse or child… it’s hard to even function!
I’m loving the metallic rose thread. ❤️🪡
February 13, 2025 at 6:36 AM
I’m loving the metallic rose thread. ❤️🪡
Word of the year: CARE - C (compassion) A (acceptance) R (respect) E (empathy). I’m showing up for myself this year.
February 11, 2025 at 4:47 AM
Word of the year: CARE - C (compassion) A (acceptance) R (respect) E (empathy). I’m showing up for myself this year.
I’m so excited for you @maggieboxey.bsky.social !!!
January 23, 2025 at 5:13 AM
I’m so excited for you @maggieboxey.bsky.social !!!