Sign in

carolecoulter.bsky.social

@carolecoulter.bsky.social
156 followers 343 following 80 posts

Mom trying to make sense of it all....Long Covid, ME/CFS, CCI, EDS, MCAS, POTS.

PostsRepliesMedia
Reposted by @carolecoulter.bsky.social
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...
44015
Reposted by @carolecoulter.bsky.social
CIDRAP @cidrap.bsky.social · 13/04/2026
Long COVID costs Organisation for Economic Co-operation and Development (OECD) countries up to $135 billion each year. A report last week by the OECD projects that long COVID’s significant social & financial costs will continue well into the next decade. ow.ly/e35t50YIuaX
Image of a woman sitting down with her head propped up on her hand, looking into the distance.
03719
Reposted by @carolecoulter.bsky.social
ME/CFS Science @mecfsscience.org · 21/02/2026
More good news. The Sequence ME & Long Covid study is launching👇 Excellent work by Action for ME for going all in on this important genetic study. Grateful for the financial support of the Schmidt Initiative for Long COVID and CODA
04516
Reposted by @carolecoulter.bsky.social
Elana Levin @levin.bsky.social · 19/02/2026
If you don’t think you know anyone with long covid what you really mean is that people are uncomfortable sharing their health status with you or there are people who have dropped out of your life (due to illness) that you haven’t checked up on.
5402141
carolecoulter.bsky.social @carolecoulter.bsky.social · 18/02/2026
Ugh, see you next week. Not watching with this cohost. #TheView
010
Reposted by @carolecoulter.bsky.social
Melissa Gira Grant @melissagiragrant.com · 16/12/2025
the way my mood lifted on hold at the third pharmacy today trying to fill a paxlovid Rx when this was the hold music
111197185
Reposted by @carolecoulter.bsky.social
BreatheTeq KN95s @breatheteq.bsky.social · 06/11/2025
We know lots of you have been asking 3M for a Black Aura - like mask for consumer use. Today we're excited to launch a new product to fill that hole in the market! Introducing the headband version of BreatheTeq KN95. Available in black and white.
black breatheteq headband maskwhite breatheteq headband mask
15364116
Reposted by @carolecoulter.bsky.social
Julie Rehmeyer @julierehmeyer.bsky.social · 30/10/2025
How do we love what we can't save — a planet, or a body? I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system... #MyalgicE #mecfs #ClimateAction #climatecrisis
jrehmeyer.substack.com
Two Systems in Collapse
What illness can teach us about responding to climate change
34720
carolecoulter.bsky.social @carolecoulter.bsky.social · 31/10/2025
@zingermans.bsky.social I totally think you could do this in A2 and the surrounding Detroit metro area.
110
Reposted by @carolecoulter.bsky.social
rahaeli @rahaeli.bsky.social · 21/09/2025
The updated COVID/histamine link thread because people keep tagging me in to explain it and I keep intending to update the post from 2023 (synecdochic.dreamwidth.org/805203.html) and just not having the capacity because of my own health shit so here is a thread I can pin
synecdochic.dreamwidth.org
Captcha Check
381211381
Reposted by @carolecoulter.bsky.social
Kelly @broadwaybabyto.bsky.social · 28/09/2025
Disabled people are particularly vulnerable to abuse under fascism. ICE has been neglecting the medical needs of detainees. One disabled immigrant, Rodney Taylor, needs our help. He's a double amputee who's been in the country since he was two years old. He's being held in solitary:
disabledginger.com
Help Rodney Taylor, a Disabled Double Amputee Being Held by ICE
Rodney has been in the country more than 40 years. He's in solitary confinement in Georgia, being denied disability accommodations and having his medical needs ignored. He must be released.
10797559
Reposted by @carolecoulter.bsky.social
Ryan Estrada @ryanestrada.com · 06/09/2025
Just a reminder to check for your name in this list of books that OpenAI trained from. If your name is there, they probably owe you several thousand dollars. OpenAI cried that if everyone eligible author files, the company will go bankrupt, so I'm alerting every author I have ever spoken to.
theatlantic.com
Search LibGen, the Pirated-Books Database That Meta Used to Train AI
Millions of books and scientific papers are captured in the collection’s current iteration.
223118719759
Reposted by @carolecoulter.bsky.social
David Kronig @davekronig.bsky.social · 24/07/2025
There’s a special kind of grief that chronically ill and disabled folks know of watching huge parts of life pass by while your body, try as it might, simply hurts too much or is too exhausted or dysregulated to do a single thing except try to stay alive from one moment to the next.
531967
Reposted by @carolecoulter.bsky.social
Miles W. Griffis @mileswgriffis.bsky.social · 01/07/2025
NEW: Some #LongCOVID and #ME specialists have raised their rates to as high as $8.5k a month, making care even less accessible. Providers say insurance companies are to blame. Contributor @brittashoot.com reports for @thesicktimes.bsky.social. thesicktimes.org/2025/07/01/p...
thesicktimes.org
Priced out: Some Long COVID and ME specialists charge high prices for concierge care - The Sick Times
One specialist is charging up to $8,500 a month. But the providers say insurance companies are to blame. Key points you should know: Prominent specialists treating complex infection-associated chronic...
15214
Reposted by @carolecoulter.bsky.social
rahaeli @rahaeli.bsky.social · 28/06/2025
I really need to figure out the right way to get this poem tattooed on me because it has gotten me out of the hole that is not my grave entirely too many times and I think everyone needs to read it this week billmoyers.com/story/poetry...
billmoyers.com
Poetry Month: WHAT RESEMBLES THE GRAVE BUT ISN’T - BillMoyers
Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave...
2531992
carolecoulter.bsky.social @carolecoulter.bsky.social · 12/06/2025
@costplusdrugs.com Is your website experiencing difficulties right now? Can't log in.
120
Reposted by @carolecoulter.bsky.social
Katy B @katybrc.bsky.social · 08/06/2025
📽️“Chronically Ignored” I really can't recommend this film highly enough to #pwME #ME #LongCovid, Researcher, Dr, HCP & Policy Maker, it's essential viewing Immense gratitude to @sibylledahrendorf.bsky.social for all her incredible hard work & everyone who took part 💙 vimeo.com/ondemand/chr...
vimeo.com
Watch Chronically Ignored Online | Vimeo On Demand
The medical term myalgic encephalomyelitis/chronic fatigue syndrome – in short ME/CFS – refers to a multi-systemic disease with devastating effects:…
2178
Reposted by @carolecoulter.bsky.social
Alice Wong @sfdirewolf.bsky.social · 28/05/2025
Mask up NOW “A new COVID variant, known as NB.1.8.1, has made landfall in the United States, and it's more transmissible than other variants.” www.huffpost.com/entry/the-mo...
huffpost.com
A New COVID Variant Is Here, And It's More Transmissible — Here Are The Signs And Symptoms
A new COVID variant, known as NB.1.8.1, has made landfall in the United States, and it's more transmissible than other variants.
301437949
Reposted by @carolecoulter.bsky.social
David Kaufman @kaufmanmd.bsky.social · 31/05/2025
Another episode of Unraveled: Understanding Complex Illness just published. If you have or know someone with ME/CFS, Long Covid, POTS, MCAS, SIBO, and more you might want to take a look and even share and subscribe. Thanks. youtu.be/_Squ0_-1kz8
youtu.be
Approach to the Complex Illness Patient
YouTube video by Unraveled: Understanding Complex Illness
02315
Reposted by @carolecoulter.bsky.social
Carl T. Bergstrom @carlbergstrom.com · 18/05/2025
Under 65 years old? No Novovax COVID vaccine for you this year. As expected, the Republicans have enabled RFK Jr. and his coterie of antivax grifters to take away your right to make your own medical decisions in consultation with your doctor. Gift Link: www.nytimes.com/2025/05/17/h...
The new restriction will sharply limit access to the Novavax vaccine for people under 65 who are in good health. It may leave Americans who do not have underlying conditions at risk if a more virulent version of the coronavirus were to emerge. It could also limit options for people who want the vaccine for a wide array of reasons, including to protect a vulnerable loved one.
15137411646
carolecoulter.bsky.social @carolecoulter.bsky.social · 14/05/2025
omg, @broadwaybabyto.bsky.social nails it. This cannot be shared enough.
120
carolecoulter.bsky.social @carolecoulter.bsky.social · 09/05/2025
This GoFundMe is for my niece. She is an incredibly strong, independent woman, yet life can throw obstacles that require the support of many. Please take a moment to read about her condition and her needs. Donations much appreciated, yet so are thoughts of encouragement. Thanks! gofund.me/c9c902b6
gofund.me
Donate to Join Us in Supporting Amy's Cancer Battle, organized by Lenore Andujar
In January 2025, Amy Bradshaw, beautiful mother, daughter, granddaughter, sis… Lenore Andujar needs your support for Join Us in Supporting Amy's Cancer Battle
010
carolecoulter.bsky.social @carolecoulter.bsky.social · 24/04/2025
www.pharmacytimes.com/view/full-co...
pharmacytimes.com
Full COVID-19 mRNA Vaccination Course Induces Long-Term Antibody, Memory B-Cell Response
New research highlights the long-lasting effectiveness of mRNA COVID-19 vaccines, showing sustained B-cell and antibody responses in health care workers over 3 years.
010
Reposted by @carolecoulter.bsky.social
Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 31/03/2025
🧠 Daily Feed of Brain Damage 🧠 With thanks to @harryspoelstra.bsky.social onlinelibrary.wiley.com/doi/10.1111/...
onlinelibrary.wiley.com
Cognitive Sequelae of COVID‐19: Mechanistic Insights and Therapeutic Approaches
Post-COVID-19 neurological syndrome, marked by cognitive dysfunction, stems from mechanisms like neuroinflammation, cerebrovascular injury, and psychological stress. This review highlights pharmacolo...
05928
carolecoulter.bsky.social @carolecoulter.bsky.social · 19/03/2025
www.caregiverwisdom.net/post/who-car...
caregiverwisdom.net
Who Cares for the Caregivers?
I’ve been thinking a lot about the tragic news reports of the deaths of Oscar-winning actor Gene Hackman, 95, and his wife and caregiver, Betsy Arakawa, 65, whose bodies were found in their New Mexico...
000
Reposted by @carolecoulter.bsky.social
The Massachusetts ME/CFS and FM Association @massmecfs.bsky.social · 15/03/2025
Today is International Long COVID Awareness Day. Please take a moment to watch this video from the Long COVID Physio group. www.youtube.com/watch?v=dmxp... Long COVID and ME/CFS share many of the same symptoms. To all the patients and caregivers, we see you. #mecfs #longcovid #longcovidawareness
1104
carolecoulter.bsky.social @carolecoulter.bsky.social · 06/03/2025
@biggretchenwhitmer.bsky.social You in?
000
Reposted by @carolecoulter.bsky.social
Angela MV (she.he.they) @angelamswinca.bsky.social · 06/03/2025
It’s really hard for me as a disabled person to engage seriously with any of the calls to action around what’s happening bc of the very real trauma of being abandoned by the same people to fend for myself against the conditions that disabled me in the first place.
1027453
Reposted by @carolecoulter.bsky.social
Onisillos @onisillos.bsky.social · 01/03/2025
If pubmed is inaccessible at the moment, try @europepmc.org
512774
carolecoulter.bsky.social @carolecoulter.bsky.social · 25/02/2025
@peters.senate.gov I do not think your constituents agree with this vote. You are not running for reelection but right now you represent us.
000
carolecoulter.bsky.social @carolecoulter.bsky.social · 22/02/2025
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. Book 8/20. #Books #BookSky #BookChallenge
010
Reposted by @carolecoulter.bsky.social
Iftah Aynayk @iftahayounak.bsky.social · 20/02/2025
This executive order gets rid of the HHS's advisory committee on Long COVID. @davidjoffe64.bsky.social @zalaly.bsky.social @virusesimmunity.bsky.social @yaneerbaryam.bsky.social
2134
Reposted by @carolecoulter.bsky.social
Rachel Graves @rachelgraves.bsky.social · 19/02/2025
I'm #ChronicallyIll with a slew of diseases no one really understands. I depend on Medicare and Social Security Disability to get the medical care I need. I need medical research to try to find better treatments for my diseases. #SaveOurServices
27117
Reposted by @carolecoulter.bsky.social
Nina Turner @ninaturner.bsky.social · 19/02/2025
Wisconsin Governor Tony Evers wants his state to become the first state to audit insurance companies over denying coverage. More of this, Democrats.
151238227
carolecoulter.bsky.social @carolecoulter.bsky.social · 17/02/2025
So many with Long Covid, ME/CFS, CCI, Tethered Cord, PCS, etc are having surgeries. (Yes, plural). This is good guidance to have.
020
carolecoulter.bsky.social @carolecoulter.bsky.social · 16/02/2025
Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. Book 7/20. #Books #BookSky #BookChallenge
020
Reposted by @carolecoulter.bsky.social
Alt National Park Service @altnps.bsky.social · 14/02/2025
Heartbreaking news… Tonight, many of our friends were let go, and tomorrow, even more will follow. Word is that all probationary employees at NPS will be let go. 😭
1867306996972
Reposted by @carolecoulter.bsky.social
Prof Christina Pagel @chrischirp.bsky.social · 13/02/2025
🧵"So this is how liberty dies..." Trump’s first 3 weeks have been a relentless flood of actions. It's incredibly hard to keep up. I’ve gone through 69 actions & mapped out the pattern - showing how they fall within 5 broad domains consistent with authoritarian states 1/9
This is a venn diagram showing how 69 Trump actions map onto domains covering: undermining democratic institutions; suppressing dissent and media; dismantling social protections; attacking science and education; destabilising the global order. A table version is available here https://docs.google.com/spreadsheets/d/1LZN7QnbSyFfUZJG8Sn1MWpK0VnfBtb0OSyZ1jxP3xBk/edit?usp=sharing
47999495725
Reposted by @carolecoulter.bsky.social
Nate Bear @natebear1.bsky.social · 12/02/2025
Loads of high profile experts spent a long time reassuring people that the virus that causes covid can't persistently infect your body and paper after paper keeps proving them wrong and now they've gone all quiet. New paper identifies viral 'reservoirs' www.sciencedirect.com/science/arti...
sciencedirect.com
Targeting the SARS-CoV-2 reservoir in long COVID
There are no approved treatments for post-COVID-19 condition (also known as long COVID), a debilitating disease state following SARS-CoV-2 infection t…
212051
Reposted by @carolecoulter.bsky.social
Kelly Barnhill @kellybarnhill.bsky.social · 11/02/2025
There has been a shift in the Trump team's language in their anti-DEI attacks. All of a sudden they started calling it "DEIA", with the A being "accessibility". If you don't think it's a coordinated effort to remove disabled people from every facet of life, well I have news for you.
402055890
carolecoulter.bsky.social @carolecoulter.bsky.social · 09/02/2025
Do you have a housebound/bedbound person in your life? They will be disenfranchised if this passes.
010
carolecoulter.bsky.social @carolecoulter.bsky.social · 09/02/2025
Reposting because since Covid, my family has had strong hope that research would bring insight and a cure for Long Covid. Also because we live in a major university town. This is awful.
030
carolecoulter.bsky.social @carolecoulter.bsky.social · 09/02/2025
Important. And seems to be underreported.
000
carolecoulter.bsky.social @carolecoulter.bsky.social · 08/02/2025
@mlive.com @freep.com
000
carolecoulter.bsky.social @carolecoulter.bsky.social · 07/02/2025
Not sure how I feel about this, but reposting for future reference.
000
Reposted by @carolecoulter.bsky.social
Lynn Stahl @msbtterswrth.altgov.info · 06/02/2025
Remember Project 2025? Folks are tracking every promise they made and it's current implementation status. They are _well_ on their way to accomplishing their goal within 100 days. docs.google.com/spreadsheets...
docs.google.com
Project 2025 tracker
42875569
Reposted by @carolecoulter.bsky.social
Oppositionista @oppositionista.bsky.social · 06/02/2025
26923
Reposted by @carolecoulter.bsky.social
Social Security Works @socialsecurityworks.org · 06/02/2025
The House Republicans listed below are vulnerable in 2026. They will only vote to cut our benefits if they think no one is watching. If you live in these districts, or know anyone who does, CALL NOW and tell them to keep their hands off Social Security, Medicare, and Medicaid!
https://www.cookpolitical.com/analysis/house/house-overview/2026-house-race-ratings-another-knife-fight-majority
21446342750
carolecoulter.bsky.social @carolecoulter.bsky.social · 06/02/2025
l@hcrichardson.bsky.social Your thoughts?
000