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camillebuckner.bsky.social
#CovidIsNotOver #TreatLongCovid #SolveME
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · 1d
💚 OPEN LETTER TO @zackpolanski.bsky.social 💚

Long Covid is a crisis being silenced. Government denial is harming lives & livelihoods.

We call for bold system change: patient-led care, biomedical research, centres of excellence & hope for those left behind.

Full open letter 👇
Open Letter to Zack Polanski from Long Covid Advocacy (Nov 11, 2025). The letter congratulates Polanski (Greens) for his voice on clean air and Long Covid, noting his commitment to systemic change resonates with their work. It states people with infection-associated chronic illness (Long Covid, ME) face deep inequality in treatment and care due to fragmented services and widespread disbelief. This requires structural change, similar to the climate crisis, demanding honesty, evidence, and reform. Long Covid Advocacy calls for BOLD POLITICS to champion: * Co-produced, trauma-informed NHS care for severe ME/Long Covid. * Quality, evidence-based medical education. * Biomedical research and patient-developed RECOVERY-style trials. * Centres of Excellence. * Public health leadership connecting clean air, infection control, and equitable care. They ask Polanski to help drive compassionate system change—a shift towards justice, science, and care—to restore hope.
November 11, 2025 at 3:03 PM
calbeargirl.bsky.social
From Twitter’s, Dr. Sean Mullen: It’s wild that SolveME’s been around since 1987… decades of wheel-spinning, no cure, no breakthrough. And now? Suddenly they think they’ve “solved it.” 👉 “It’s nothing new. Long Covid is just ME.” A novel virus with unique molecular features and a global infection footprint ≠ a decades-old ME/CFS crisis. Bro… you don’t “SolveME” by siphoning Long Covid funds, contaminating cohorts, and muddying biomarker data. Even your own ME-funded study showed the signatures are distinct. Different. Stop pretending otherwise.
September 26, 2025 at 3:47 PM
massmecfs.bsky.social
MassME is proud to sign on to this letter encouraging subgroup tracking and analysis in the NIH RECOVER TLC clinical trials for Long COVID.
massmecfs.org/advocacy/nat...

#massmecfs #MEAction #SolveMe #openmedicinefoundation #batemanhornecenter #renegaderesearch #redefiningmecfs #corecommunity
NIH RECOVER TLC clinical trials for Long COVID. - Massachusetts ME/CFS & FM
massmecfs.org
September 17, 2025 at 1:27 PM
solveme.bsky.social
Yes! We'll record and post it to our YouTube page ASAP:
www.youtube.com/@SolveME/vid...
SolveME
Welcome to the video home for the Solve ME/CFS Initiative (Solve M.E.). Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cure...
www.youtube.com
July 31, 2025 at 6:35 PM
coollindsay.bsky.social
I wish he’d come back to solveme
July 28, 2025 at 1:17 AM
tomkindlon.bsky.social
Mini report on Capitol Hill Advocacy Week 2025

From the Massachusetts ME/CFS & FM Association @massmecfs.bsky.social

massme.monkeypod.io/mailcoach/we...

#MEcfs #CFS @solveme.bsky.social
Capitol Hill Advocacy Week 2025 On June 24th and 26th, 230 ME/CFS advocates participated in over 150 meetings with congressional offices. Once again impeccably coordinated by SolveME, these meetings allow individuals to speak directly to legislative office staff, raising awareness of the debilitating reality of this illness and presenting a unified message about the need to protect critical research funding. These are obviously challenging times for this work, but advocates showed up nonetheless with their stories and their hope. Advocates from Massachusetts met with the offices of both Senators Markey and Warren, and six of our nine Representatives: Stephen Lynch, Ayanna Pressley, Katherine Clark, Bill Keating, Jake Auchincloss, and Jim McGovern. There were four asks this year: restore the CDMRP funding for ME/CFS research at the Department of Defense; protect the CDC's ME/CFS program from cuts; fund the NIH's ME/CFS Research Roadmap; and explore ways to update the now ten-year-old NASEM (formerly IOM) report. Kudos to those who gave their time, their spoons, and their stories in this effort. Thank you!
July 25, 2025 at 12:50 AM
mecfssd.bsky.social
Webinar Tomorrow! 🚨
Join solveME on July 22 @ 3PM PT / 6PM ET for a deep dive into the ADDRESS-LC trial studying bezisterim’s impact on brain fog & fatigue in Long Covid.
Hear from experts & learn how to participate!
🔗 Sign up: ow.ly/lhSa50WiKu0
THE ADDRESS-LC TRIAL: STUDYING THE IMPACT OF BEZISTERIM ON BRAIN FOG AND FATIGUE IN PEOPLE WITH LONG COVID Tuesday, July, 22 @ 3 PM PT/6 pm ET With Photos of: Penelope Markham, PhD Senior Vice President BioVie Michael Peluso, MD Assistant Professor of Medicine, University of California, San Francisco Ezra Spier Creator, longcovidstudies.net & Member, Patient-Led Research Collaborative Emily Taylor President & CEO Solve M.E.
July 22, 2025 at 1:36 AM
mefelag.bsky.social
Skrá hlaupara:

www.rmi.is/hlaupastyrku...

#reykjavikurmarathon #LongCovidVitundarvakning #MEvitundarvakning #reykjavikmarathon #MEer #LCer #meawareness #millionsmissing #EkkiGefastUpp #myalgicencephalomyelitis #SolveMe #MyalgicEncephalomyelitis #lífiðmeðme #hlaupastyrkur
July 6, 2025 at 2:42 AM
taniataylorpowers.bsky.social
www.tiktok.com/t/ZTj3BTgHx/ @solveme.bsky.social #solveme #solvemecfs #solvecfs #mecfs #mecfsawareness #longcovid #longcovidawareness
#solveme #solvecfs #solvemecfs #solvemeadvocacy #solvemeadvocacyweek #longcovid #longcovidawareness #mecfs #mecfsawareness #mecfseducation #mecfstiktok #longcovidtiktok #disability #infectionpreventio...
TikTok video by Tania Powers
www.tiktok.com
June 25, 2025 at 6:38 PM
taniataylorpowers.bsky.social
solvecfs.quorum.us/campaign/128...

#mecfs #solveme #mecfsawareness #longcovid #longcovidawareness
Tell Congress: Restore Lifesaving Medical Research Funding!
The CDMRP was slashed by 57%—putting vital research for ME/CFS, ALS, brain injuries, and more at risk. Help restore this funding by urging your Representative to cosponsor H.R. 3906 today.
solvecfs.quorum.us
June 24, 2025 at 3:37 AM
stepnhicks.bsky.social
Building number sense & critical thinking!

🔢Estimation 180: www.estimation180.com
🟡Splat!: www.stevewyborney.com?p=8936
🧩SolveMe Puzzles: solveme.edc.org
🔍Visual Patterns: www.visualpatterns.org
➗Would You Rather Math: www.wouldyourathermath.com

#EduSky #GiftedEd #NumberSense #criticalthinking
www.estimation180.com
June 18, 2025 at 10:06 PM
eha.sh
A very awesome friend just matched my donation to SolveME to bring us a grand total of $10,030 raised for ME research and advocacy this month!! I'm not crying, you're crying 😭
eha.sh e. hashman @eha.sh · Jun 1
We did it!!! We raised $2838 for @openmedf.bsky.social and @meactnet.bsky.social (and I also threw in $500 for @solveme.bsky.social), bringing us to a grand total raised of $9514 for ME advocacy and research after my employer match! Thanks so much to everyone who participated 💙
Screenshot of charitable grants: $500 to SolveME, $1131 to Open Medicine Foundation, and $1707 to MEAction for a total of $3338 donated. Two of the grants have a dedication in honour of "ME Awareness Month Fundraiser"
June 3, 2025 at 3:05 AM
eha.sh
If someone wants to match my donation to SolveME, that'll bring us over $10k. Wouldn't that be a nice round number?!
June 1, 2025 at 6:46 PM
eha.sh
We did it!!! We raised $2838 for @openmedf.bsky.social and @meactnet.bsky.social (and I also threw in $500 for @solveme.bsky.social), bringing us to a grand total raised of $9514 for ME advocacy and research after my employer match! Thanks so much to everyone who participated 💙
Screenshot of charitable grants: $500 to SolveME, $1131 to Open Medicine Foundation, and $1707 to MEAction for a total of $3338 donated. Two of the grants have a dedication in honour of "ME Awareness Month Fundraiser"
June 1, 2025 at 6:46 PM
alyciawritesindy.bsky.social
"Echoes of the Undone" is built from real stories of disabled & chronically ill people.
Starting bid: $75 | Buy now: $150
All proceeds to Solve ME.
Bid via @CorpielFamilyShoppe on IG/FB.
#DisabilityArt #SolveME #ChronicIllness #SpoonieVoices
May 21, 2025 at 3:05 PM
rivkabluesky.bsky.social
I hope everyone also watches the
SolveME webinar of April 29, 2025, to hear more from Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. You also hear from both me & Megan Fitzgerald, the 2 Patient Reps on this exciting research project. The webinar is here: www.youtube.com/watch?v=2DQZ...
Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID
YouTube video by SolveME
www.youtube.com
May 16, 2025 at 12:58 AM
danharrang.bsky.social
May 12th is Myalgic Encephalomyelitis Awareness Day. On this day, the millions of people with myalgic encephalomyelitis (#MillionsMissing) gather to demand recognition, research and clinical care for people with ME. #SolveME
May 12, 2025 at 4:34 AM
danharrang.bsky.social
Massive sit in/lay-in,
Berlin, Germany today, bringing awareness to the deadliness and lack of options currently available for treating or curing ME/CFS. #MillionsMissing #SolveME #OMF
May 11, 2025 at 12:47 AM
danharrang.bsky.social
www.meactions.org/millionsmiss...
I've been absent from career, hobbies, weddings, funerals, graduations, reunions, volunteer opportunities and everything else that adds meaning to our lives for more than five years.
I don't want your pity, I'd like your understanding.❤️‍🔥 #MillionsMissing #SolveME
Take Action for ME/CFS
For #MillionsMissing 2025, #MEAction is sending out an SOS.
www.meactions.org
May 6, 2025 at 4:52 AM
albadocherty.bsky.social
Rob Wust (pd by PatientLed, SolveME) is the new Leonard Jason, manufacturing trash studies to falsely conflate MECFS in LongCovid

His last study was such an offense to science that other resarchers *publicly contested it. So much wrong w/this study, too.
www.healthrising.org/blog/2025/0...
Too Much Exertion Produces Autonomic Nervous System Hit in Long COVID, ME/CFS, and Fibromyalgia - Health Rising
Geoff’s Narrations The GIST The Blog   A trip to Seattle to see Dr. Ruhoy held up the blogs a bit but they’re back! Exercise physiologist Rob Wust’s “Wearable heart rate variability monitoring identifies autonomic dysfunction and thresholds for post-exertional malaise in Long COVID” study did something simple but important: […]
www.healthrising.org
April 14, 2025 at 8:20 PM
tomkindlon.bsky.social
Solve M.E. @solveme.bsky.social Annual Advocacy Week

Links:
solvecfs.org/advocacy/adv...
lobbydayregistration.wufoo.com/forms/m1m4lh...

Image is from MassME @massmecfs.bsky.social April Newsletter

www.massmecfs.org/newsletters/...

#MEcfs #LongCovid
Solve M.E. ADVOCACY WEEK Register for Advocacy Week 2025, June 23-27 We strongly encourage you to sign up for SolveME's annual Capitol Hill advocacy effort. All meetings will be held virtually, so no travel is required. SolveME will provide all the guidance you need to share your story with your elected representative, and to advocate for the research funding we need. "The stronger our voices, the greater our impact. Let's make sure every leader in Washington understands the urgent need for research and care." Registration closes on May 12, so sign up now.
April 11, 2025 at 1:49 AM
albadocherty.bsky.social
The "sources" for this article? "Long Covid" nonprofits SolveME, PatientLed, and LC Campaign 😂

It's almost as if journalism is dead and everything is just propaganda, a fundraiser, or...both

Too bad these "activists" only asked for $1M to be reinstated, and not whole the $11B in cuts, right?
April 8, 2025 at 4:17 PM
albadocherty.bsky.social
The "sources" for this article? "Long Covid" nonprofits SolveME, PatientLed, and LC Campaign 😂

It's almost as if journalism is dead and everything is just propaganda, a fundraiser, or...both

Too bad these "activists" only asked for $1M to be reinstated, and not whole the $11B in cuts, right?
April 7, 2025 at 8:38 PM
bhanlon15.bsky.social
LA ist: “The future of Long COVID research is unknown, five years after the start of the pandemic”

“we'll take a look at the latest Long COVID research and what challenges future research faces”

Dr. Kimberly Shriner, Huntington Hospital & Emily Taylor, SolveME Initiative

laist.com/shows/airtal...
Previewing President Trump’s ‘Liberation Day,’ as stock market drop offers glimpse into tariff concerns
Today on AirTalk, Trump's looming tariffs have caused a stock market downturn. How else will consumers be affected? As HHS closes its COVID office, what do we know about Long Covid? Call in and tell u...
laist.com
April 6, 2025 at 12:36 PM
mnmmath.bsky.social
This is one of my favorite for introducing balanced equations. Goes great with solveme mobiles! #ElemMathChat
March 21, 2025 at 1:54 AM