Reposted by The Real McCoyemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead? 3198161
Reposted by The Real McCoyAlem Matthees @alemmatthees.bsky.social · 24/09/2026(1/3) Worth remembering that the NHS clinics delivering CBT/GET generally failed to inform #MECFS patients about potential harms and typically did not record adverse events. (Aside: Patients often report there is resistance to recording harms, so we do not know the true extent of it.)journals.sagepub.comSage Journals: Discover world-class researchSubscription and open access journals from Sage, the world's leading independent academic publisher. 2218
Reposted by The Real McCoyTom Kindlon @tomkindlon.bsky.social · 23/09/2026Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/ 33317
Reposted by The Real McCoyemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/09/2026They still need people with ME or caregivers in Mississippi, West Virginia, & North Dakota. Please share! 01211
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce... 37237
Reposted by The Real McCoyWilhelmina Jenkins @wilhelminaj.bsky.social · 04/09/2026Friends, a major problem in the demographics of ME/CFS studies is the absence of Black participants. If you know of any Black adults with ME/CFS, please suggest that they complete this survey. I have completed it and it is relatively untaxing. Thanks! 4118112
Reposted by The Real McCoyAdam @abrokenbattery.bsky.social · 01/09/2026Karen Gordon Update Sign the petition www.change.org/p/save-karen... 52116
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 25/08/2026If you’re interested in understanding how ME/CFS relates to Long Covid, this quick review of the literature is worth a read—thanks Tom for bringing it over in a format that doesn’t require a Twitter login. 1299
Reposted by The Real McCoyTom Kindlon @tomkindlon.bsky.social · 23/08/2026From @meresearchuk.bsky.social Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses. When people from all walks of life describe similar physical experiences, it offers a powerful insights into ME/CFS. tinyurl.com/PEMimpactME 64717
Reposted by The Real McCoyTom Kindlon @tomkindlon.bsky.social · 21/08/2026Poignant words from Anil van der Zee "Not an Advocate. Not Your Silver Lining Porn. Just Desperation" anilvanderzee.com/not-an-advoc... It ends: "I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward." #MEcfs #PwME 13311
Reposted by The Real McCoyWilhelmina Jenkins @wilhelminaj.bsky.social · 19/08/2026Great article from The Sick Times on the efforts to include ME/CFS & Long COVID in the 2027 Congressional appropriations. 05216
Reposted by The Real McCoyTom Parsons @tomparsons.bsky.social · 08/08/2026Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way. 15322
Reposted by The Real McCoyThe Author, Séamas O'Reilly @seamas.bsky.social · 13/08/2026Not to be some wild-eyed innocent, but I think it should be slightly bigger news that The Lancet have crunched the numbers and found that Musk's USAID cuts will kill 14 million people. And that's just by 2030. That's 9,600 people a day, every day, until the next world cup rolls around. 7350492754
The Real McCoy @rippermd41.bsky.social · 13/08/2026There are many things known by the #MECFS and #LongCovid communities that barely show up in the medical literature. The effectiveness of IV fluids is one. It affects patient care and research. I was barely able to convince my NP to try them with a case study and case series in ME. 2193
Reposted by The Real McCoyKelly @broadwaybabyto.bsky.social · 13/08/2026“If it were really that bad you would have more support”. People believe that when you’re disabled, help magically appears. That when you get worse, you get more help and/or funding. The reality is far different. There’s little to no help. We live in legislated poverty. Survival is hard. 631197
The Real McCoy @rippermd41.bsky.social · 13/08/2026This is still expensive, but those with #MECFS and #LongCovid know this is relatively cheap by comparison. Most of the specialty clinics don’t take insurance. This is the reality we live with: you can only access doctors with knowledge of ME and LC if you’re wealthy. 182
Reposted by The Real McCoy#MEAction Network @meactnet.bsky.social · 11/08/2026A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME 174
The Real McCoy @rippermd41.bsky.social · 09/08/2026Today is #SevereMEDay I dropped from moderate to #SevereME 3 years ago. It’s really hard to paint a picture of how bad this illness can get, but I’ll add pieces from my journal below. 1/ 15118
Reposted by The Real McCoyWilhelmina Jenkins @wilhelminaj.bsky.social · 09/08/2026Today is Severe ME Day. I wanted to post today about falling from moderate/severe ME into severe ME 4 1/2 years ago. Yesterday, I sat in my wheelchair a little too long. Today, I’m wrecked. Severe ME is totally unforgiving. (My daughter is writing this.) 1211942
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2026Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME. 15848
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 29/07/2026The current state of Long Covid care: 19233
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 27/07/2026The survey has 100+ unique emergency room narrative responses already! But we're aiming for 150 before we close. If you have a diagnosis of #MECFS or #LongCOVID and have been to the emergency room in the past 10 yrs for your symptoms, I hope you'll take the survey. And if you don't, please share! 37578
Reposted by The Real McCoyWilhelmina Jenkins @wilhelminaj.bsky.social · 20/07/2026The next step in the @meactnet.bsky.social/Mayo Clinic collaboration to improve care for those living with ME/CFS addresses our emergency room experiences. If you live with ME/CFS and have visited the emergency room for your symptoms in the past ten years, please fill out the survey below. 1179
Reposted by The Real McCoy#MEAction Network @meactnet.bsky.social · 06/07/2026It is Medicaid Monday! We are sharing a step-by-step guide to submitting a comment to CMS regarding their Interim Final Rule on Medicaid work requirements. Deadline July 31! We have a template document with all the information you need! Head to ow.ly/hoVX50ZkQhc and we walk you through it. 11914
Reposted by The Real McCoyThe Sick Times @thesicktimes.org · 01/07/2026☀️ As The Sick Times approaches our 3-year anniversary, we’re shifting from a startup to a more sustainable newsroom, in it for the long haul. And we’re marking that shift with a summer sustainability fundraiser. 🌱 2 weeks, 200 new Supporters? Help us grow? the-sick-times.fundjournalism.org/donate/ 08953
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 22/06/2026Please take a moment to read through and share information about the changes to Medicaid and what that means for the disability community! #NEISvoid #MECFS 03419
Reposted by The Real McCoyWilhelmina Jenkins @wilhelminaj.bsky.social · 13/06/2026ME/CFS community! Please, if you are able, come to the community meeting held by #MEAction on tomorrow - Sunday, June 14 at 3 PM ET. We are facing a changed advocacy environment, and to make any progress, we have to forge new paths and move forward together. Come tomorrow and see where we stand. 02716
Reposted by The Real McCoy#MEAction Network @meactnet.bsky.social · 12/06/2026From our friends at @solveme.bsky.social! Take action today by submitting a comment and contacting Congress. Thanks to Solve M.E. for organizing this response on this critical issue. 11211
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 02/06/2026ok the more I stare at the image of zero studies, the angrier I am. Wired, are you for real? Did you not check for a single study in a reputable journal, first? You're advertising snake oil to desperate people on what? a whim? I assumed a study had come out, at least, even if it was very poor. 512413
Reposted by The Real McCoybetsy ladyzhets 😷 @betsyladyzhets.bsky.social · 17/04/2026I'm working on a story for @thesicktimes.org about RECOVER clinical trial results that have been shared so far (from the VITAL, NEURO, and AUTONOMIC studies), and am looking for people in the #LongCOVID and IACC communities to share what they think of the findings. DM or email me! 34734
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 17/04/2026Exciting update! The drive to ask Senators to sign a request for Long Covid funding is going so well that the deadline has been extended to Monday—calls and shares this weekend will continue to help! And 13 Senators have already signed on! Ask yours to join: tinyurl.com/LongCOVIDCall 14524
Reposted by The Real McCoyemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 16/04/2026Please call or email your Senators by close of business Friday 4/17 & ask them to sign on to the “Dear Colleague” letter for Long Covid funding: Call tool: win.newmode.net/longcovidcam... Email tool: win.newmode.net/longcovidcam...win.newmode.netNew/Mode | Make your voice impossible to ignore 01917
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 17/04/2026#MECFS Important piece from @sunsopeningband.bsky.social detailing what’s known about post-exertional malaise and what science must take into account in order to advance research on this critical phenomenon.likeannopeningbandforthesun.substack.comIn Pursuit of Understanding the CrashWhat Post-Exertional Physiology Tells Us About ME/CFS 2267
Reposted by The Real McCoySparrow / Liz @untonuggan.myatproto.social · 12/04/2026I'm extremely belated at boosting this but *waves hands* these workshops are happening this week It's a creativity + advocacy workshop: a way to creatively frame your own experiences to help push for key systemic goals in preparation for #MillionsMissing 11713
Reposted by The Real McCoy#MEAction Network @meactnet.bsky.social · 09/04/2026Storytelling is a key part of #MillionsMissing! Find all you need in our toolkit: ow.ly/IUOk50YGIh9 It’s essential that we make our policymakers understand that ME is a serious, complex disease that deserves care and support, appropriate treatments and research. #FrailAndFurious #MECFS 0107
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 27/03/2026Email Congress for ME/CFS funding! Prescripted—just takes 1 min! Can personalize it if you like, but it’s not required. There’s an option to follow up w/phone calls. My ME is so severe that I can’t speak, but calls make even more impact, so I’m v grateful to anyone willing to lend me their voice 🤍solvecfs.quorum.usTell Congress to Fund ME/CFS Research in FY279 million Americans live with ME/CFS — a serious, disabling disease with no FDA-approved treatments. I just contacted my representatives to urge them to increase CDC funding, keep ME/CFS as an eligibl... 11711
Reposted by The Real McCoyIt's ME(Jaime) @exceedhergrasp1.bsky.social · 26/03/2026#MECFS is not consistently recognized, diagnosed, or safely managed! Join #Solve and #MEAction in asking State Medical Boards to meet and support questions on national medical licensing exams. Add your name & share: tinyurl.com/StateMedicalBoardForm #NEISvoid, #MECFS #pwME #LongCOVID #IACCstinyurl.comCommunity Letter Sign-on FormThank you for adding your voice to this effort. By signing on, you are joining patients, caregivers, clinicians, and allies across the country in asking State Medical Boards and State Health Leadershi... 05635
Reposted by The Real McCoyaslynn is just a ghoul 👻 @aslynnromano.com · 10/01/2026Heath Howard enters the chat running for the seat now held by Jeanne Shaheen Those of you following along at home have heard me scream about how Jeanne and Mags Hassan have been 25% of the problem w/ key votes 2025 Heath is an Autistic guy w/ a disability who seems to be a real one doing the work 1248
The Real McCoy @rippermd41.bsky.social · 05/01/2026Nothing like getting ready for in-person doctor’s appt with #MECFS Subjecting myself to (likely) more medical trauma for little reward and knowing I’ll be in even worse shape until March 🫠media.tenor.comIm Having A Lot Fun This Is Really Fun For Me Dan Levy GIFAlt: GIF of Dan Levy in Schitt’s Creek saying “I’m having a lot of fun. 1236
Reposted by The Real McCoyPhillyPhile215 @phillyphile215.bsky.social · 04/01/2026#pwLC #pwME #NEISVoid @lccampaign.bsky.social founder @meighanstone.bsky.social needs our help! She’s had a recent housing emergency/mold exposure—causing unforeseen expenses/health issues. More info here.👇 Please help if you can and share with anyone you know who can assist. gofund.me/6bd94d22dgofund.meDonate to Keep LC Campaign Founder Housed and Medically Stable, organized by Melissa MazurFriends, Long COVID Campaign Founder Meighan Stone needs our help! … Melissa Mazur needs your support for Keep LC Campaign Founder Housed and Medically Stable 33127
Reposted by The Real McCoyMiles W. Griffis @mileswgriffis.bsky.social · 31/12/2025Urgent last request to help us meet our fundraising goal at @thesicktimes.org! Help be a part of independent journalism on Long COVID. All donations and shares are greatly appreciated 🙏🏼😷 04547
Reposted by The Real McCoyBrittany S. @oklasotagal.bsky.social · 30/12/2025Statement Re: OU Discrimination Investigation Today, my client, Mel Curth, submitted her appeal of the University's Institutional Equity Office finding that she engaged in arbitrary and capricious grading of a student's assignment in violation of that student's religious liberty. 372530580
Reposted by The Real McCoyJulia Métraux @juliametraux.bsky.social · 29/12/2025Wrote about how disappointing it is that Jon Stewart punched down on people masking at @motherjones.com, when people should mind their own business and leave mask wearers be. www.motherjones.com/politics/202...motherjones.comHey Jon Stewart, jokes about wearing masks aren't funnyCritics of the Daily Show host say he's a hypocrite. 493794944
Reposted by The Real McCoyKristin Houlihan, Writer @kristinwrites.bsky.social · 26/12/2025Anyone use Lumia? #POTS #MECFS #LongCovid. Looking for personal experience. 2118
The Real McCoy @rippermd41.bsky.social · 23/12/2025In case you missed it Canada changed their citizenship laws recently. If you have Canadian ancestry you may be eligible for citizenship by descent. I need to look into it some more but this is amazing. immigration.ca/claiming-can...immigration.caClaiming Canadian Citizenship by Descent Under Canada’s New Citizenship Act Bill C-3 - Canada Immigration and Visa Information. Canadian Immigration Services and Free Online Evaluation.Learn how Canada’s new Bill C-3 restores citizenship by descent, removes the first-generation limit, and allows multigenerational claims for those born abroad. 1217684
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 22/12/2025March 31, 2020: 16620
Reposted by The Real McCoyTom Kindlon @tomkindlon.bsky.social · 21/12/2025Telehealth is vital for people with #LongCOVID. Don’t let it disappear thesicktimes.org/2025/12/19/t... This article explains why telehealth (remote/virtual healthcare) is needed by patients with Long Covid,ME/CFS, & other chronic illnesses & lists some advocacy actions for Canada & the US #MEcfsthesicktimes.orgTelehealth is vital for people with Long COVID. Don’t let it disappear. - The Sick TimesChanges to telehealth policies are more than an inconvenience. For many of us, critical infrastructure is in jeopardy, and we urgently need government policy to protect it. 24317
Reposted by The Real McCoyC.H. Romatowski @chromatowski.bsky.social · 21/12/2025#NEISvoid Letterboxd squad: have you rated Unrest yet? There’s some pretty frustrating ableism in the reviews that’s dragging the score down. I’d love to boost it to encourage other Letterboxd viewers to check it out! 1115
Reposted by The Real McCoyJulia Métraux @juliametraux.bsky.social · 20/12/2025This hurts my heart because some parents would risk having a dead kid due to believing that's better than having an autistic kid. (No, vaccines don't lead to people being autistic but that's why some people aren't get their kids vaccinated). 212121
Reposted by The Real McCoyMichael Hobbes @michaelhobbes.bsky.social · 19/12/2025Congratulations to everyone who wrote an op-ed about how he just wants americans to eat better 7166301610