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meactmaryland.bsky.social
MEActMaryland
@meactmaryland.bsky.social
2K followers 1.9K following 330 posts
#MEActionMaryland
Maryland chapter of the #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in MD/DMV

https://youtube.com/@meactmaryland

https://linktr.ee/meactmd
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meactmaryland.bsky.social
MEActMaryland @meactmaryland.bsky.social · Jun 29
~Q & A Capstone Episode~
Interview with Dr. Peter Rowe

~ premieres today ~
Monday, 6/29/2026 @1pmET
tinyurl.com/RoweMECFSped...

6th and final episode of Evidence-Based Pediatric ME/CFS, an updated video guide for #pediatric #MECFS
#RoweMECFSWebinars
meactmaryland.bsky.social
Alamort has the word origin one might expect:

French: à la mort -> English literal translation "to the death"
hopefullizzy.bsky.social Lizzy @hopefullizzy.bsky.social · Aug 25
So when I thought that there were no words that existed to describe the unique ‘exhaustion’ M.E in everyday life… turns out I was wrong. Here it is:

#MECFS #myalgicencephalomyelitis #severeme
August 26, 2026 at 3:39 AM
Reposted by MEActMaryland
mecfssd.bsky.social
New NIH NINDS/MECFSnet Webinar Series: Oct. 8 launch focuses on post-acute infection symptoms, including mechanisms of symptom persistence, with research relevant to ME/CFS and model systems. 1–3 p.m. ET rtiorg.zoom.us/webinar/regi...
Welcome! You are invited to join a webinar: ME/CFS Exchange Webinar Series — Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?. After registering, you ...
Welcome! You are invited to join a webinar: ME/CFS Exchange Webinar Series — Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?. After registering, you ...
rtiorg.zoom.us
August 25, 2026 at 5:41 PM
Reposted by MEActMaryland
meactnet.bsky.social
We are sharing a few samples from the amazing Writers Gallery that is part of our Severe ME Artists Project!

All writings available in our still gallery to be read: www.meaction.net/severe-me-ar...

Or read aloud at our community watch party (thanks @corywysz.bsky.social): youtu.be/deJLdcQr3W4?...
August 25, 2026 at 8:12 PM
meactmaryland.bsky.social
At home, low-impact #MECFS study opportunity. None of my words will match those of @vashetc.blacksky.app, the study's creator:
vashetc.blacksky.app victoria @vashetc.blacksky.app · Aug 17
In 2022 I went for my regular mile run. It was my very last. In 2023 I took a few steps & sat back down in my rollator. This was my last time standing. A few months later, I crawled to the bathroom & back to bed. That was my last time being able to crawl.

The disease I have is called ME/CFS.
August 17, 2026 at 11:09 PM
Reposted by MEActMaryland
exceedhergrasp1.bsky.social
#MECFS patients have a very low quality of life: lower than people with chronic renal failure, lower than heart failure, lower than any disease QOL to which it's been compared. So what is 'severe' ME?

While there are many definitions, here is one from Montoya et al. (2021). 🧵

#SevereMEDay 🧪
Severity in ME/CFS - #MEAction logo in gold in upper right-hand corner, with www.meaction.net underneath. Content of slide says: MILD: Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities. MODERATE: Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school. SEVERE: Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May require mobility devices VERY SEVERE: Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch. May need total care. Cited: Montoya, J. G., Dowell, T. G., Mooney, A. E., Dimmock, M. E., & Chu, L. (2021). Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare, 9(10), 1331.
August 8, 2024 at 3:02 PM
meactmaryland.bsky.social
SEVERE ME DAY Honoring people severely affected by myalgic encephalomyelitis August 8 Includes a photograph of Thomas Point lighthouse in the Chesapeake Bay with a blue and yellow sky and orange light reflected on the water
August 9, 2026 at 3:09 AM
meactmaryland.bsky.social
Mutual aid request (sent in from a community member) for a person with Long Covid, ME, and Sjogrens.

chuffed.org/project/1920...
Mission! Mirabelle’s Survival of Long Covid + ME
My sister, Mirabelle Fall (34), is a 4+ year survivor of Long Covid, ME / CFS and Sjögren’s autoimmune. She’s a lifelong hard worker, graduated from Columbia University as a scholarship student, dedic...
chuffed.org
August 5, 2026 at 4:04 AM
Reposted by MEActMaryland
meactnet.bsky.social
Join the #UnitedForME collaborative (Bateman Horne Center, #MEActionhttps://bsky.app/profile/did:plc:hedpcce7vylvdgibxuxjsuzb" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky-mention">#MEAction Network, Open Medicine Foundation (OMF), Solve M.E.) with WIMEL guests for a special "Coffee" with a Clinician in honor of Severe ME Awareness Month on Aug 12 at 1 pm ET. Register: https://ow.ly/eV4u50ZwhXA
#SevereME
Portraits of six speakers featured in a 'Coffee with a Clinician' event for Severe ME/CFS Awareness Month. Pictured from left to right 1st row: Amy Mooney (Bateman Horne) , Laurie Jones (MEAction), Danielle Meadows (Open Medicine Foundation) 2nd row: Emily Taylor (Solve M.E.) , Stoo Brown (WIMEL), and Clayton Powers (moderator) Text at top: "Coffee" with a clinician in recognition of Severe ME/CFS Awareness Month
August 4, 2026 at 6:17 PM
Reposted by MEActMaryland
meactnet.bsky.social
Gwynn joined us in DC for #MillionsMissing. She shared Lisa’s personal essay from the new book “What is Myalgic Encephalomyelitis Like?"

Lisa so powerfully shared her story of life with severe ME.

Full video: youtu.be/-M5sCn1ftqw

WIMEL book of essays: tinyurl.com/WIMEL

#PwME #SevereME
July 16, 2026 at 7:24 PM
meactmaryland.bsky.social
~Q & A Capstone Episode~
Interview with Dr. Peter Rowe

~ premieres today ~
Monday, 6/29/2026 @1pmET
tinyurl.com/RoweMECFSped...

6th and final episode of Evidence-Based Pediatric ME/CFS, an updated video guide for #pediatric #MECFS
#RoweMECFSWebinars
June 29, 2026 at 4:11 PM
meactmaryland.bsky.social
Phenomenal descriptive piece on post exertional malaise #PEM
darthfoo.bsky.social Fred Rossi @darthfoo.bsky.social · Mar 13
Crashed hard, been gone weeks. Severe post-exertional malaise. Not resting by choice, resting because the alternative is worse. “Why I Can’t Just Meet You for Dinner” explains the economics of it.
#PEM #LongCOVID #MECFS #PwME

substack.com/@darthfoo/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
June 29, 2026 at 8:51 AM
meactmaryland.bsky.social
Now available

~ Slides ~ Transcript ~ Sources ~

Evidence-Based Pediatric ME/CFS
with Dr. Peter Rowe (ep1)

Slides: tinyurl.com/RoweSlidesME...
Transcript tinyurl.com/RoweTranscri...
Sources: tinyurl.com/RoweSourcesM...

* * * *

📢Airs today, Monday, 6/29/2026 📢
Capstone Q & A with Dr Rowe
June 29, 2026 at 7:08 AM
meactmaryland.bsky.social
Q & A Quote of the day
~Sunday 6/28/26~

“We made a number of discoveries that we think have helped people. [MECFS] is still an interesting puzzle to try and solve to benefit patients and that’s what we’re in medicine for.”
--Dr. Peter Rowe
#MyalgicEncephalomyelitis #pwME #pediatric #NEISVoid
“We made a number of discoveries that we think have helped people. [MECFS] is still an interesting puzzle to try and solve to benefit patients and that’s what we’re in medicine for” --Dr. Peter Rowe Q & Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series youtube.com/@MEActMaryland blue & yellow background with geometric designs #MEAction Maryland logo ~Q & A Capstone interview with Dr. Peter Rowe airing Monday 6/29!~
June 28, 2026 at 7:24 PM
meactmaryland.bsky.social
Q & A Quote of the day
~Saturday 6/27/26~

1/2

“We still need more knowledge about what PEM entails… Our general impression is that if we can get at the main physiological abnormality in each patient — usually that’s the orthostatic intolerance — ..."
-Rowe

#NEISVoid #pwME #PostExertionalMalaise
“We still need more knowledge about what PEM entails… Our general impression is that if we can get at the main physiological abnormality in each patient — usually that’s the orthostatic intolerance — if we can treat that effectively, people then can increase their activity without generating PEM.” --Dr. Peter Rowe Q & Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series youtube.com/@MEActMaryland blue & yellow background with geometric designs #MEAction Maryland logo ~Q & A Capstone interview with Dr. Peter Rowe airing Monday 6/29!~
June 27, 2026 at 10:22 PM
Reposted by MEActMaryland
meactionnc.bsky.social
💙Thank you, Blue Sunday supporters!

After expenses, our Blue Sunday Tea Party for ME raised $1,658 for @solveme.bsky.social & @meactnet.bsky.social
With matching funds, the impact is over $2,619!

Thanks to all who donated, attended, & shared our event.
☕💙
#BlueSunday2026 #MillionsMissing #MECFS
A heart shape filled in with blue china tea cups, forget-me-nots, and a blue piggy bank at the center. The Piggy has a sign hanging from neck saying "Thank You" and a blue bow. At the bottom in the heart is blue ME/CFS awareness ribbon. The text and logs say #MEActionNC raised $829 for SolveME and $829 for #MEAction for a total of $1659 for their Blue Sunday fundraiser.
June 23, 2026 at 3:53 PM
Reposted by MEActMaryland
caseydoherty.bsky.social
I'm so glad I was able to join and speak at #MillionsMissing 2026.

As I say in my remarks about fighting Medicaid cuts & work requirements: "We put ourselves at risk because this is the fight FOR our lives. It's the fight OF our lives."

Thank you for fighting for & with us, @meactnet.bsky.social ❤️
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Jun 25
Casey Doherty @caseydoherty.bsky.social shares her experience with myalgic encephalomyelitis (ME) at #MillionsMissing 2026 in D.C.

Join us in taking action today regarding work requirements for Medicaid. All info you need is here: www.meaction.net/frail-and-fu...

youtube.com/shorts/8quSh...
Casey Doherty shares her experience with myalgic encephalomyelitis (ME) at #MillionsMissing 2026.
YouTube video by The ME Action Network
youtube.com
June 26, 2026 at 6:31 PM
meactmaryland.bsky.social
Q & A Quote of the day
~Thurs 6/25/26~

“If you’ve got an adolescent who can’t stand for longer than five minutes at the mall, you’ve got an organic problem until proven otherwise ”

-Dr. Peter Rowe

#MyalgicEncephalomyelitis #pwME #pediatric #POTS

Q & A capstone interview airing Monday, June 29th!
“If you’ve got an adolescent who can’t stand for longer than five minutes at the mall, you’ve got an organic problem until proven otherwise. ” --Dr. Peter Rowe Q & Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series youtube.com/@MEActmaryland ALT - blue & yellow background with geometric designs #MEAction Maryland logo Q & A capstone interview airing Monday, June 29th!
June 26, 2026 at 7:46 PM
meactmaryland.bsky.social
Q&A Quote of the day
~Thurs 6/25/26~

“1.2 or 1.3 percent of the [US] population is affected [by ME/CFS]. That’s an enormous crisis in health care.”
--Dr. Peter Rowe
#MyalgicEncephalomyelitis #pwME #pediatric

Q & A capstone interview airing Monday, June 29th!
“1.2 or 1.3 percent of the [US] population is affected [by ME/CFS]. That’s an enormous crisis in health care.” --Dr. Peter Rowe Q&A Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series Background: blue & yellow geometric design with #MEAction Maryland logo
June 26, 2026 at 3:47 AM
Reposted by MEActMaryland
meactnet.bsky.social
Dr. Victoria Copeland wrote a statement for Casey Doherty to share at #MillionsMissing 2026.

@vashetc.bsky.social shares their experience as a #pwME & preliminary findings on a research study she is conducting about rest, energy, and myalgic encephalomyelitis. More info: restandmecfs.com
June 25, 2026 at 9:46 PM
Reposted by MEActMaryland
exceedhergrasp1.bsky.social
Press release out about our Emergency Department project for people with #MECFS and #LongCOVID !

www.meaction.net/post/meactio...
June 25, 2026 at 1:32 AM
meactmaryland.bsky.social
Q & A Quote 6/24
“[Pediatric ME/CFS] was a tremendous unmet need. There were patients who were often not getting to school; the older ones couldn’t get to college; the young adults were unable to work. I thought this would be a completely worthwhile way to spend my time in medicine”
-Dr Peter Rowe
Text: “[Pediatric ME/CFS] was a tremendous unmet need. There were patients who were often not getting to school; the older ones couldn’t get to college; the young adults were unable to work. I thought this would be a completely worthwhile way to spend my time in medicine.” -- Dr. Peter Rowe Q & A Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series youtube.com/@MEActMaryland Background blue & yellow geometric designs. #MEAction Maryland logo #MyalgicEncephalomyelitis #pwME #pediatric
June 25, 2026 at 6:19 AM
meactmaryland.bsky.social
All Resources Now for Episode 2 -
Pediatric Orthostatic ME/CFS: a Focus on Management

~Slides~ tinyurl.com/RoweSlidesME...

Final webinar, a Q & A capsule interview with Dr. Peter Rowe drops: Monday, June 29th

#MyalgicEncephalomyelitis #NEISVoid
ALT-TEXT all slides contain white/yellow/blue geometric background shapes. The photo on most pages (not page 1) is Dr Rowe, a white man with glasses. Includes #MEAction Maryland logo Page 1: QR code to the Slides; shows an image of the first slide
June 24, 2026 at 11:52 PM
meactmaryland.bsky.social
~Coming Monday 6/29/2026~

"If you understand ME/CFS, you'll have an incredible knowledge base for all of medicine"
--Dr. Peter Rowe

Q & A Capstone Episode
Evidence-Based Pediatric ME/CFS Webinar Series

Sharing a quote a day ahead of the episode premiere!
"If you understand ME/CFS, you'll have an incredible knowledge base for all of medicine" --Dr. Peter Rowe Q & A Capstone Episode Evidence-Based Pediatric ME/CFS Webinar Series Quote is on Blue & yellow background logos include #TeachMETreatME logo and #MEAction Maryland
June 23, 2026 at 11:51 PM
Reposted by MEActMaryland
mecfssd.bsky.social
@cortjohnson.bsky.social Health Rising Article Major PolyBio 2026 takeaway: Long COVID & ME/CFS may be tissue diseases. Researchers found abnormalities in gut, lymph nodes, arteries, retina, CSF flow & brainstem, often missed by blood tests. www.healthrising.org/blog/2026/06...
Visible At Last? Are Long COVID and ME/CFS Tissue Diseases? The PolyBio 2026 Symposium Pt I - Health Rising
Geoff’s Narration The GIST   The 2026 PolyBio Spring Symposium – Pt I One way to gauge the health of a field is by the number of conferences/symposia it supports. From the looks of things, the long–CO...
www.healthrising.org
June 19, 2026 at 5:15 PM
meactmaryland.bsky.social
Slides - Transcripts - Sources

Now available!!

Joint Hypermobility / EDS in Pediatric ME/CFS
with Dr. Peter Rowe (episode 3)

* * * *
📢Coming Soon 📢
Capstone Q & A with Dr Rowe
~ an hourlong interview with pioneer of pediatric ME/CFS
Blue, yellow & white background with an image of Dr Rowe, a white man wearing glasses. Text tells the objectives of the medical education webinar series: ~Background on EDS & Joint hypermobility ~Association between JH/ and Pediatric ME/CFS ~Reasons to assess for JH/EDS in the clinic care & research studies of Pediatric ME/CFS #EhlersDanlosSyndrome #EDS #hypermobile #MECFS #myalgicencephalomyelitis
June 19, 2026 at 11:24 PM