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The Real McCoy

@rippermd41.bsky.social
2.3K followers 912 following 1.8K posts

My life runs by the Murphy’s Law of illness: If something can go wrong, it will go wrong. Latest one is #MECFS but the laundry list is long. Live in New England

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026
I’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?
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Alem 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.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026
Ror 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/

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
0.44
0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/09/2026
They still need people with ME or caregivers in Mississippi, West Virginia, & North Dakota. Please share!
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪 Talk 1: bsky.app/profile/exce...
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 04/09/2026
Friends, 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!
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Adam @abrokenbattery.bsky.social · 01/09/2026
Karen Gordon Update Sign the petition www.change.org/p/save-karen...
Update
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C.H. Romatowski @chromatowski.bsky.social · 25/08/2026
If 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.
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Tom Kindlon @tomkindlon.bsky.social · 23/08/2026
From @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
What post-exertional malaise (PEM) in ME/CFS feels like 
worst flu 
complete energy drain 
worst hangover 
poisoned pain aching 
sleep making no difference 
having been run over/hit by a vehicle 
made of lead 
nausea weak 
body shutdown 
jet lag 

bone deep exhaustion 
wading through mud 
plug pulled out 
Recurring themes from ME Research UK 
Symptom Saturday PEM Survey 
INFORM. INFLUENCE. INVEST. 

R UK e
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Tom Kindlon @tomkindlon.bsky.social · 21/08/2026
Poignant 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
Photo of Anil's naked body slumped over his electric wheelchair 

with the following text

Not an Advocate. Not Your Silver Lining Porn. Just Desperation.
Publicada el August 21, 2026
I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life.

While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about. So that we’ll be treated according to what this disease deserves.
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 19/08/2026
Great article from The Sick Times on the efforts to include ME/CFS & Long COVID in the 2027 Congressional appropriations.
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Tom Parsons @tomparsons.bsky.social · 08/08/2026
Today 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.
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The Author, Séamas O'Reilly @seamas.bsky.social · 13/08/2026
Not 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.
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The Real McCoy @rippermd41.bsky.social · 13/08/2026
There 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.
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Kelly @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.
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The Real McCoy @rippermd41.bsky.social · 13/08/2026
This 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.
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#MEAction Network @meactnet.bsky.social · 11/08/2026
A 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
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The Real McCoy @rippermd41.bsky.social · 09/08/2026
Today 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/
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 09/08/2026
Today 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.)
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2026
Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME.
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C.H. Romatowski @chromatowski.bsky.social · 29/07/2026
The current state of Long Covid care:
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 27/07/2026
The 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!
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 20/07/2026
The 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.
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#MEAction Network @meactnet.bsky.social · 06/07/2026
It 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.
Step-by-step guide to submitting a public comment on Medicaid work requirements for people with serious medical conditions, with a QR code to access the MEAction template. Text: People with serious or complex medical conditions should be exempt from Medicaid work requirements. Period. Join us in submitting your own public comment. MEAction template available!
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The 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/
Black and chartreuse text over a cartoon fam background reads, “The Sick Times. Help us create, grow, and sustain our Long COVID journalism.” 
2. Thermometer graphic in which The Sick Times' fundraising goal is represented by a row of pixelated hearts, as you might see in an old-school video game. The hearts are all black outlines, and the first one on the left is filled in with a little bit of red. Text above the hearts reads: "The Sick Times - Goal: 200 new monthly supporters." Underneath the hearts, there is a cartoon drawing of a field with flowers.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 22/06/2026
Please take a moment to read through and share information about the changes to Medicaid and what that means for the disability community! #NEISvoid #MECFS
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Wilhelmina Jenkins @wilhelminaj.bsky.social · 13/06/2026
ME/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.
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#MEAction Network @meactnet.bsky.social · 12/06/2026
From 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.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/06/2026
ok 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.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 17/04/2026
I'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!
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C.H. Romatowski @chromatowski.bsky.social · 17/04/2026
Exciting 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
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 16/04/2026
Please 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.net
New/Mode | Make your voice impossible to ignore
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C.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.com
In Pursuit of Understanding the Crash
What Post-Exertional Physiology Tells Us About ME/CFS
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Sparrow / Liz @untonuggan.myatproto.social · 12/04/2026
I'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
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#MEAction Network @meactnet.bsky.social · 09/04/2026
Storytelling 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
Person using a megaphone to amplify their voice, promoting storytelling for the #MillionsMissing campaign in 2026. 
Text: "Storytelling is a key part of #MillionsMissing this year!  There are HUGE policy implications this year for telling your story. Share your story on social media and/or to our story bank. See our #MillionsMissing Take Action Toolkit for all the info."
Detailed photo description: White woman with brown hair pulled back wearing sunglasses and a coat holds  megaphone and is speaking into it. Above her is a sign that says "amplify your voice."
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C.H. Romatowski @chromatowski.bsky.social · 27/03/2026
Email 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.us
Tell Congress to Fund ME/CFS Research in FY27
9 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...
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It'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 #IACCs
tinyurl.com
Community Letter Sign-on Form
Thank 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...
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aslynn is just a ghoul 👻 @aslynnromano.com · 10/01/2026
Heath 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
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The Real McCoy @rippermd41.bsky.social · 05/01/2026
Nothing 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.com
Im Having A Lot Fun This Is Really Fun For Me Dan Levy GIF
Alt: GIF of Dan Levy in Schitt’s Creek saying “I’m having a lot of fun.
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PhillyPhile215 @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/6bd94d22d
gofund.me
Donate to Keep LC Campaign Founder Housed and Medically Stable, organized by Melissa Mazur
Friends, Long COVID Campaign Founder Meighan Stone needs our help! … Melissa Mazur needs your support for Keep LC Campaign Founder Housed and Medically Stable
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Miles W. Griffis @mileswgriffis.bsky.social · 31/12/2025
Urgent 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 🙏🏼😷
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Brittany S. @oklasotagal.bsky.social · 30/12/2025
Statement 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.
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Julia Métraux @juliametraux.bsky.social · 29/12/2025
Wrote 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.com
Hey Jon Stewart, jokes about wearing masks aren't funny
Critics of the Daily Show host say he's a hypocrite.
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Kristin Houlihan, Writer @kristinwrites.bsky.social · 26/12/2025
Anyone use Lumia? #POTS #MECFS #LongCovid. Looking for personal experience.
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The Real McCoy @rippermd41.bsky.social · 23/12/2025
In 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.ca
Claiming 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.
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C.H. Romatowski @chromatowski.bsky.social · 22/12/2025
March 31, 2020:
Two tweets from me on March 31, 2020

The press should be asking public officials whether they expect a rise in #MECFS cases following the Corona virus and what they plan to do about that long tail of this public health crisis.

ME already affects almost 1% of the population (2.8M Americans)an onset typically follows a viral infection. So that number may rise precipitously.

Meanwhile there are 12 ME doctors in the entire country.
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Tom Kindlon @tomkindlon.bsky.social · 21/12/2025
Telehealth 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 #MEcfs
thesicktimes.org
Telehealth is vital for people with Long COVID. Don’t let it disappear. - The Sick Times
Changes 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.
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C.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!
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Julia Métraux @juliametraux.bsky.social · 20/12/2025
This 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).
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Michael Hobbes @michaelhobbes.bsky.social · 19/12/2025
Congratulations to everyone who wrote an op-ed about how he just wants americans to eat better
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