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MEActMaryland

@meactmaryland.bsky.social
2K followers 1.9K following 327 posts

#MEActionMaryland Maryland chapter of the #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in MD/DMV youtube.com/@meactmaryland linktr.ee/meactmd

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MEActMaryland @meactmaryland.bsky.social · 26/08/2026
Alamort has the word origin one might expect: French: à la mort -> English literal translation "to the death"
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ME/CFS San Diego @mecfssd.bsky.social · 25/08/2026
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...
rtiorg.zoom.us
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 ...
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#MEAction Network @meactnet.bsky.social · 25/08/2026
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?...
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MEActMaryland @meactmaryland.bsky.social · 18/08/2026
At home, low-impact #MECFS study opportunity. None of my words will match those of @vashetc.blacksky.app, the study's creator:
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2024
#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.
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MEActMaryland @meactmaryland.bsky.social · 09/08/2026
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
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MEActMaryland @meactmaryland.bsky.social · 05/08/2026
Mutual aid request (sent in from a community member) for a person with Long Covid, ME, and Sjogrens. chuffed.org/project/1920...
chuffed.org
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...
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#MEAction Network @meactnet.bsky.social · 04/08/2026
Join the #UnitedForME collaborative (Bateman Horne Center, #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: 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
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#MEAction Network @meactnet.bsky.social · 16/07/2026
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
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MEActMaryland @meactmaryland.bsky.social · 29/06/2026
~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
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MEActMaryland @meactmaryland.bsky.social · 29/06/2026
Phenomenal descriptive piece on post exertional malaise #PEM
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MEActMaryland @meactmaryland.bsky.social · 29/06/2026
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
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MEActMaryland @meactmaryland.bsky.social · 28/06/2026
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!~
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MEActMaryland @meactmaryland.bsky.social · 27/06/2026
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!~
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#MEAction NC @meactionnc.bsky.social · 23/06/2026
💙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.
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Casey Doherty @caseydoherty.bsky.social · 26/06/2026
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 ❤️
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MEActMaryland @meactmaryland.bsky.social · 26/06/2026
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!
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MEActMaryland @meactmaryland.bsky.social · 26/06/2026
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
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#MEAction Network @meactnet.bsky.social · 25/06/2026
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
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 25/06/2026
Press release out about our Emergency Department project for people with #MECFS and #LongCOVID ! www.meaction.net/post/meactio...
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MEActMaryland @meactmaryland.bsky.social · 25/06/2026
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
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MEActMaryland @meactmaryland.bsky.social · 25/06/2026
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
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MEActMaryland @meactmaryland.bsky.social · 24/06/2026
~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
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ME/CFS San Diego @mecfssd.bsky.social · 19/06/2026
@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...
healthrising.org
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...
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MEActMaryland @meactmaryland.bsky.social · 20/06/2026
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
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MEActMaryland @meactmaryland.bsky.social · 10/06/2026
Thurs, June 11th at 3pm ET Sallie Rediske, MPT Accessing PT, OT, SLP & Functional care in #MECFS @mecfssd.bsky.social
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Billy Hanlon @bhanlon15.bsky.social · 26/05/2026
Excited to dig into the Minnesota Dept. of Health’s Statewide Roadmap to Address Long COVID and Post‑Viral Chronic Conditions, published today It’s a 136‑page effort — deep gratitude to all contributors! Read the full document here: www.health.state.mn.us/diseases/lon...
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Sue Poncin @sueponcin.com · 26/05/2026
Just the tip of the iceberg….. Long Covid has directly wrecked many lives already. How many more will be impacted once the billion $ crash happens? Thanks @seekingboston.bsky.social for the perfect image!
A painting like picture of a Titanic like steamer labeled US Economy headed towards an iceberg. The iceberg labeled Covid is Over above the water and Long Covid, Disability, Economic Ruin, Apathy, Ruined Lives below water.
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#MEAction Network @meactnet.bsky.social · 21/05/2026
REMINDER! Deadline to apply to MEAction's writing workshops offered for our community in collaboration with the Writers Guild Initiative is tomorrow - May 22 by midnight eastern. Apply here: ow.ly/Xklf50Z2Rgg #pwME #MECFS #MyalgicEncephalomyelitis #WritingCommunity
Reminder for writing workshops with Writers Guild Initiative on June 6th, 13th, and 20th; apply by May 22, 2026, midnight ET.
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MEActMaryland @meactmaryland.bsky.social · 19/05/2026
Intriguing Free Virtual workshop on "Seeing Symptoms" about using art to make the invisible illnesses more visible. Thurs, May 28th at 3pmET/12PT Includes art and poetry (from the description).
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#MEAction Network @meactnet.bsky.social · 16/05/2026
Blue Sunday ,The Tea Party for M.E., is tomorrow - May 17, 2026! Everyone is invited! A huge thank you to Anna Redshaw for creating this event. More info: ow.ly/BcyJ50Z0yxi #MEAction NC invites everyone at 1 pm. ow.ly/iYCA50Z0yxj #BlueSunday202 #TeaPartyForME2026
Invitation for Blue Sunday tea party on May 17, 2026, featuring a blue floral teacup and saucer with a handwritten 'you're invited' note.
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ME/CFS San Diego @mecfssd.bsky.social · 15/04/2026
Blue Sunday Tea Party May/17/2026: the-slow-lane.com/2026/04/07/h... Some ideas: you can wear blue, enjoy tea&cake your way, &/or connect with others online or in person while sharing your setup with hashtags #BlueSunday2026, #TeaPartyForME2026. Optional donations: the-slow-lane.com/donation-pag....
the-slow-lane.com
Here we go again… Blue Sunday is back
It’s all coming together for Blue Sunday 2026. We hope you’ll join us on Sunday 17th May, to mark the occasion in whatever way works best for you. The Blue Sunday tabs at the top of thi…
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Tom Kindlon @tomkindlon.bsky.social · 17/05/2026
Delighted to get this coverage in the Sunday World, one of the newspapers with the largest readership in Ireland #MEcfs #PwME
Scan of the article as published in the printed newspaper. Includes a photo of Dr Amolak Bansal
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#MEAction Network @meactnet.bsky.social · 15/05/2026
Shaina shared her #Medicaid story at #MillionsMissing. Access to Medicaid is lifesaving. Our #FrailAndFurious campaign focuses on protecting Medicaid for ME, Long COVID, other IACCs & disabilities. Join our fight! Video: youtube.com/shorts/AtklkLnMztI $7k match! ow.ly/TUg750Z0j7j
Shaina (olive skin-toned Creole woman in wheelchair wearing red jacket and blue leggings) shares her Medicaid experience at a public event with a seated audience outside HHS building for #MillionsMissing.
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Lizzy @hopefullizzy.bsky.social · 15/05/2026
Writings from my heart. We’re not asking much. We’re really not asking for much. #millionsmissing #MECFS #myalgicencephalomyelitis #MEawarenessweek
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e. hashman @eha.sh · 17/05/2026
It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations! For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. For now, this is my day to day: hashman.ca/me-cfs/
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María Richardson @diatoma.bsky.social · 17/05/2026
Gathered blues in México for #BlueSunday2026 #TeaPartyForME2026 and donated what I'd pay for coffee & a treat to @meactnet.bsky.social 🦋. @rebeccasolnit.bsky.social's book felt appropriate as #GreatestMEdicalScandal is full of medical misogyny. *see www.johnvsjon.com @johnvsjonvsme.bsky.social
Photograph with an assortment of blue items, including a bowl with blueberries, a Murano glass ashtray, two Mexican crafts (a feline and a tucan), a cup of coffee and Solnit's book 'Men Explain Things to Me'
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Tom Kindlon @tomkindlon.bsky.social · 17/05/2026
2/ On Fri I posted how my mum decorated the table for #BlueSunday2026 Here's today's spread We're doing it in aid of @irishmecfsassoc.bsky.social www.idonate.ie/fundraiser/B... but other worthy charities other worthy charities are listed here the-slow-lane.com/donation-pages ) #TeaPartyForME2026
Photo of a table prepared with food and decorations for blue Sunday
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 17/05/2026
#BlueSunday2026 #TeaPartyForME2026 (My tea is iced this year. 🥵) supporting Open Medicine Foundation @openmedf.bsky.social + monthly support to Patient Led @patientled.bsky.social
A white person’s hand holding a glass of iced tea outside; it is sunny and there are various green bushes, one with pink flowers, and a green lawn in the background
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 17/05/2026
Happy #BlueSunday2026 #TeaPartyForME2026 ! I just donated the cost of a coffee/pastry to @meactnet.bsky.social & to mutual aid for people with ME 🩵
My view from bed of Mabel the chi mix, a blue & white coffee mug, & coffee cake
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MEActMaryland @meactmaryland.bsky.social · 14/05/2026
Thanks to the Maryland advocates who put their energy into advocating for the NIH ME/CFS Roadmap and strengthening our relationships with Congressional offices #MEAwarenessWeek
Image showing black text on a light blue field, with a picture of the US Capitol and Thomas Point Lighthouse. 

#ME Action MARYLAND on CAPITOL HILL 2026

Advocates from #MEAction Maryland met with staffers from the offices of Senator Chris Van Hollen, Senator Angela Alsobrooks, Representative Sarah Elfreth, Representative John A. Olszeski, Jr., Representative April McClain Delaney, and Representative Jamie Raskin.

Advocates included Bridget Collins, Cheryl Lohman, MD, Diane Bean, Lauren Bean, Sam Keating, and Gwynn Dujardin.

Advocates raised awareness about ME/CFS and advocated for the implementation of the NIH ME/CFS Research Roadmap. 

We furnished each office with briefing memos about ME/CFS and the Research Roadmap.
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Miranda 🌸 @crookedneighbor.bsky.social · 13/05/2026
I didn't have the energy to post about #WorldMEDay yesterday because getting to the #MillionsMissing demonstration took everything out of me. But it was incredibly moving to be able to gather with people in person. As others have said, I feel like I am one of the lucky ones
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#MEAction Network @meactnet.bsky.social · 14/05/2026
MEAction had an excellent meeting with Senator Graham’s office yesterday about funding the ME/CFS Research Roadmap. Thank you to MacKenzie Hand (in video) & all advocates who joined us in DC - we met with 8 Congressional Offices in partnership with #NotJustFatigue! #MillionsMissing
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The Creatively Maladjusted @tyrotcm.bsky.social · 13/05/2026
Just got off telemed with my new immunologist. I like a doctor who doesn't blink when I say things like "myalgic encephalomyelitis" - no unfamiliarity, no surprise at my knowing & correctly pronouncing the term, just routine recognition. #NEISVoid
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MEActMaryland @meactmaryland.bsky.social · 13/05/2026
Closing out Maryland's second day on the Hill, we were at the office of @alsobrooks.senate.gov meeting with staff And talking up the NIH ME/CFS Research Roadmap
Gwynn & Bridget stand outside of the office of Senator Alsobrooks (MD) after a long day of meetings and #MillionsMissing in front of the main HHS building.
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Pillow Writers @pillowwriters.bsky.social · 11/05/2026
We’ve seen a lot of pictures like this today! We hope everyone who has received their copy is as happy as this.
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MEActMaryland @meactmaryland.bsky.social · 04/05/2026
Ask Ben (#MEAction 's US Advocacy Director) Anything About Medicaid Tues, 3pm ET live on IG Like... What would our community want the medically frail recommendations to include if we were designing things?
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Litsa Dremousis @litsadremousis.bsky.social · 04/05/2026
Some really good tips here for people w/ #MyalgicEncephalomyelitis who want to share their stories online in light of the potential catastrophic changes to Medicaid: #pwME #FrailandFurious #MillionsMissing
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Annals of Family Medicine @annfammed.bsky.social · 29/04/2026
A new study suggests potentially helpful medications used by myalgic encephalomyelitis/chronic fatigue syndrome specialists may be underutilized to treat ME/CFS in #PrimaryCare @grachstephanie.bsky.social @mayoclinic.org @mayoclinicgimfl.bsky.social @meactnet.bsky.social doi.org/10.1370/afm....
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#MEAction Network @meactnet.bsky.social · 30/04/2026
Telling your story for #MillionsMissing this year is so important! There are MANY ways to tell your story & it all helps! Be yourself & know that if sharing your story brings up big feelings, you are not alone! We are here to help: ow.ly/lMWt50YSCqy #FrailAndFurious
Text-based graphic focusing on MEAction requesting sharing personal stories on social media and story bank to impact policy this year for #MillionsMissing. Photo in corner: Wilhelmina Jenkins (black woman with graying hair) lying in bed holding a sign that says Believe ME. Text:  There are HUGE policy implications this year for telling your story. Share your story on social media and/or to our story bank.  Helpful tips. See our toolkit for all the info.
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