From Jaime Seltzer, Scientific Director at #MEAction
"Great news! We were just awarded a seed grant for our Emergency Department Project from the General Internal Medicine CME Education Committee at Mayo Clinic!
We're that much closer to funding the entire project, thanks to hard work from our team and all of your support!"
You can read more about this project at the donation link:
https://millionsmissing.funraise.org/fundraiser/meactionemergencydepartmentproject
"What Juneteenth reminds us for ME and Long COVID communities"
https://www.meaction.net/post/what-juneteenth-reminds-us-for-me-and-long-covid-communities
"Black Americans are also significantly more likely to develop Long COVID than white Americans.
Yet they are less likely to receive a formal diagnosis or appropriate follow-up care. The same medical disbelief and diagnostic delays that have plagued the ME/CFS community for decades fall harder on patients of color, compounding an already inequitable system."
From #MEAction :
"Our Severe ME Artists Project 2026 is coming in recognition of Severe ME day! Full details:
https://www.meaction.net/post/severe-me-artists-project-2026-call-for-entries
Please note: Many people with Severe ME can no longer practice art. Others have been able to find creative ways to continue. We hold space for those grieving."
(USA)
#MEAction "We’re furious: Last-minute changes to defining medical frailty"
https://www.meaction.net/post/we-re-furious-last-minute-changes-to-defining-medical-frailty
Screenshot from AMMES June 2026 newsletter
Good video (about 5 1/2 minutes) from the #MEAction Millions Missing event on May 12:
https://www.youtube.com/watch?v=UE3U8O5rWcg
I got a chuckle from this line:
"And to everyone who has had to explain this illness for the 700th time this week, I see you."
Anyone else out there who can relate to having to explain this illness over and over again?
#MEcfs #LongCovid #PwME #Caregivers #ChronicIllness #MillionsMissing
#MEAction:
We Made Real Progress at #MillionsMissing — Here's What's Next
Update on the May 12th event at the HHS headquarters in Washington, DC, and a report on getting funding for the ME/CFS Research Roadmap.
https://www.meaction.net/post/we-made-real-progress-at-millionsmissing-here-s-what-s-next
There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDT
Everyone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
22/n
#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
If you're a US resident you can add your story to #MEAction’s story bank.
They want stories from patients, caregivers, friends & family, healthcare providers, disability advocates - anyone who wants to contribute!
They particularly need stories from folks who rely on Medicaid.
You can remain anonymous if you like. Your story can include photos or video (optional)
Details:
https://airtable.com/app4hQ0Pkj285JqK1/pag3Ar4l6GfUGtxP1/form
18/n
I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
17/n
Ahimsa
Billy Hanlon
Tom Kindlon
