MEActMaryland @meactmaryland.bsky.social · 26/08/2026Alamort has the word origin one might expect: French: à la mort -> English literal translation "to the death" 081
Reposted by MEActMarylandME/CFS San Diego @mecfssd.bsky.social · 25/08/2026New 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.usWelcome! 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 ... 086
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 25/08/2026We 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?... 188
MEActMaryland @meactmaryland.bsky.social · 18/08/2026At home, low-impact #MECFS study opportunity. None of my words will match those of @vashetc.blacksky.app, the study's creator: 273
Reposted by MEActMarylandIt'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 🧪 39936
MEActMaryland @meactmaryland.bsky.social · 05/08/2026Mutual aid request (sent in from a community member) for a person with Long Covid, ME, and Sjogrens. chuffed.org/project/1920...chuffed.orgMission! Mirabelle’s Survival of Long Covid + MEMy 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... 022
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 04/08/2026Join 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 0138
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 16/07/2026Gwynn 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 02913
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 062
MEActMaryland @meactmaryland.bsky.social · 29/06/2026Phenomenal descriptive piece on post exertional malaise #PEM 081
MEActMaryland @meactmaryland.bsky.social · 29/06/2026Now 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 051
MEActMaryland @meactmaryland.bsky.social · 28/06/2026Q & 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 094
MEActMaryland @meactmaryland.bsky.social · 27/06/2026Q & 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 131
Reposted by MEActMaryland#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 262
Reposted by MEActMarylandCasey Doherty @caseydoherty.bsky.social · 26/06/2026I'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 ❤️ 163
MEActMaryland @meactmaryland.bsky.social · 26/06/2026Q & 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! 040
MEActMaryland @meactmaryland.bsky.social · 26/06/2026Q&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! 032
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 25/06/2026Dr. 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 11712
Reposted by MEActMarylandIt's ME(Jaime) @exceedhergrasp1.bsky.social · 25/06/2026Press release out about our Emergency Department project for people with #MECFS and #LongCOVID ! www.meaction.net/post/meactio... 43814
MEActMaryland @meactmaryland.bsky.social · 25/06/2026Q & 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 152
MEActMaryland @meactmaryland.bsky.social · 25/06/2026All 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 153
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! 041
Reposted by MEActMarylandME/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.orgVisible At Last? Are Long COVID and ME/CFS Tissue Diseases? The PolyBio 2026 Symposium Pt I - Health RisingGeoff’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... 0106
MEActMaryland @meactmaryland.bsky.social · 20/06/2026Slides - 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 122
MEActMaryland @meactmaryland.bsky.social · 10/06/2026Thurs, June 11th at 3pm ET Sallie Rediske, MPT Accessing PT, OT, SLP & Functional care in #MECFS @mecfssd.bsky.social 110
Reposted by MEActMarylandBilly Hanlon @bhanlon15.bsky.social · 26/05/2026Excited 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... 44015
Reposted by MEActMarylandSue Poncin @sueponcin.com · 26/05/2026Just 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! 1166
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 21/05/2026REMINDER! 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 052
MEActMaryland @meactmaryland.bsky.social · 19/05/2026Intriguing 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). 154
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 16/05/2026Blue 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 02522
Reposted by MEActMarylandME/CFS San Diego @mecfssd.bsky.social · 15/04/2026Blue 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.comHere we go again… Blue Sunday is backIt’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… 032
Reposted by MEActMarylandTom Kindlon @tomkindlon.bsky.social · 17/05/2026Delighted to get this coverage in the Sunday World, one of the newspapers with the largest readership in Ireland #MEcfs #PwME 44110
Reposted by MEActMaryland#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 075
Reposted by MEActMarylandLizzy @hopefullizzy.bsky.social · 15/05/2026Writings from my heart. We’re not asking much. We’re really not asking for much. #millionsmissing #MECFS #myalgicencephalomyelitis #MEawarenessweek 4274
Reposted by MEActMarylande. hashman @eha.sh · 17/05/2026It'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/ 22015
Reposted by MEActMarylandMaría Richardson @diatoma.bsky.social · 17/05/2026Gathered 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 5319
Reposted by MEActMarylandTom Kindlon @tomkindlon.bsky.social · 17/05/20262/ 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 0115
Reposted by MEActMarylandAlexis 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 1186
Reposted by MEActMarylandemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 17/05/2026Happy #BlueSunday2026 #TeaPartyForME2026 ! I just donated the cost of a coffee/pastry to @meactnet.bsky.social & to mutual aid for people with ME 🩵 34315
MEActMaryland @meactmaryland.bsky.social · 14/05/2026Thanks to the Maryland advocates who put their energy into advocating for the NIH ME/CFS Roadmap and strengthening our relationships with Congressional offices #MEAwarenessWeek 192
Reposted by MEActMarylandMiranda 🌸 @crookedneighbor.bsky.social · 13/05/2026I 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 4249
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 14/05/2026MEAction 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 0176
Reposted by MEActMarylandThe Creatively Maladjusted @tyrotcm.bsky.social · 13/05/2026Just 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 2324
MEActMaryland @meactmaryland.bsky.social · 13/05/2026Closing 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 2269
Reposted by MEActMarylandPillow Writers @pillowwriters.bsky.social · 11/05/2026We’ve seen a lot of pictures like this today! We hope everyone who has received their copy is as happy as this. 2206
MEActMaryland @meactmaryland.bsky.social · 04/05/2026Ask 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? 031
Reposted by MEActMarylandLitsa Dremousis @litsadremousis.bsky.social · 04/05/2026Some 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 066
Reposted by MEActMarylandAnnals of Family Medicine @annfammed.bsky.social · 29/04/2026A 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.... 05221
Reposted by MEActMaryland#MEAction Network @meactnet.bsky.social · 30/04/2026Telling 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 11715