Myrl
LightNews LightNews
banner
myrljohnson.bsky.social
Myrl
@myrljohnson.bsky.social
130 followers 170 following 330 posts
Fan of books, movies, family, friends, recipes, beaches, mountains

Always looking for information and inspiration; #pwME #pwMCAS
Ally
Try to be of service
Posts Replies Media Videos
Reposted by Myrl
tomkindlon.bsky.social
"Those Who Were Already Here"

centerleftstack.substack.com/p/those-who-...

Someone with long Covid eloquently thanks those with ME/CFS who have supported with advice, etc. the Long Covid new arrivals with similar symptoms & impairments

#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis
Those Who Were Already Here Learning to Live Inside a History I Did Not Choose Fred Rossi Dec 24, 2025 Arrival Without a Map When I first began trying to understand what was happening to my body, everything felt new. Not just new to me, but new in the way that feels destabilizing. As if the ground itself had shifted and no map existed. Long COVID arrived wrapped in uncertainty. Doctors hesitated. Research lagged. Language failed. Each symptom seemed to require explanation from scratch. I thought I was living at the edge of something unprecedented. That belief did not last. Gradually, almost accidentally, I began encountering people who spoke about my present as if it were familiar. They used words I was just learning. Post-exertional malaise (PEM). Pacing. Crashes. Baseline. They described patterns that mirrored my days with unsettling precision. They were not speculating. They were remembering. This was my introduction to the ME/CFS community. A community that had been here long before I arrived. Recognition, Not Surprise The people who live with ME/CFS did not greet Long COVID with surprise. They greeted it with recognition.
January 31, 2026 at 11:56 PM
Reposted by Myrl
meownersclub.bsky.social
A great but unbearably sad essay. I appreciate the recognition but I’m also terribly concerned for the post-Xmas crash+the loss+grief

The perpetrators of the #BPS model didn’t just betray #pwME; in preventing research they set the stage for this post-pandemic #LC crisis #ShameOnThem #Wessely #ME
February 1, 2026 at 12:42 AM
Reposted by Myrl
colleensteckel.bsky.social
#medsky

ME/CFS is an umbrella term so it's important to stratify patients.

But all Dr's need to understand the danger of exercise in these patient groups.

Pushing patients to exercise has led to dire outcomes.
January 9, 2026 at 6:01 PM
Reposted by Myrl
mcollinsmorton.bsky.social
The ongoing pandemic of Covid-19 has forced all of us to reveal our true selves, for better or worse. In many instances, unquestionably for worse.
December 31, 2025 at 1:22 AM
Reposted by Myrl
putrinolab.bsky.social
helper given your long history of good works. You clearly have a lot of fans in the disabled community, so please apologize and commit to doing better.

Walt Whitman never said it, but Ted Lasso definitely did:
“Be curious, not judgmental”.

🙏🏻

/end
December 29, 2025 at 12:30 PM
Reposted by Myrl
kaufmanmd.bsky.social
This may be the most important science post of the year. My only huge reservation is how unavailable this intervention is to our patients with Long Covid and ME/CFS. But...we will keep trying
erictopol.bsky.social Eric Topol @erictopol.bsky.social · Dec 20
The one validated intervention to slow aging and extend healthspan is not for sale.
It's exercise.
sciencedirect.com/science/arti...
December 21, 2025 at 2:41 AM
Reposted by Myrl
tomkindlon.bsky.social
News Release 16-Dec-2025

New research identifies linked energy, immune and vascular changes in ME/CFS

www.eurekalert.org/news-release...

Full paper:
www.sciencedirect.com/science/arti...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of top of press release
December 17, 2025 at 2:06 PM
Reposted by Myrl
exceedhergrasp1.bsky.social
I'm giving a talk next week and you're invited!

✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨

The talk is donate-as-you're-able, and 20% will support #MEAction.

You can sign up to attend here: us06web.zoom.us/meeting/regi...
A winter scene flyer with my pic at the bottom. It reads: Please join us for a talk on: Improving Quality of Life in ME/CFS talk - questions - suggestions December 17 2025 12pm ET, 9am PT, 11am CT Sliding Scale Donations 20% of proceeds to MEAction Talk followed by Q&A Hosted by Jaime Seltzer Scientific Director, MEAction @exceedhergrasp1
December 12, 2025 at 6:23 PM
Reposted by Myrl
michaeledward.bsky.social
"Everything changes, everything moves, everything revolves, everything flies and goes away."

~ Frida Kahlo
December 9, 2025 at 10:05 AM
Reposted by Myrl
renegaderesearch.bsky.social
Research papers and links from our Clinician's Roundtable with Drs. Tania Dempsey & @kaufmanmd.bsky.social 🧵

We linked these in the YouTube transcript too

The effect of GLP-1RA exenatide on idiopathic intracranial hypertension: a randomized clinical trial: pmc.ncbi.nlm.nih.gov/articles/PMC...
The effect of GLP-1RA exenatide on idiopathic intracranial hypertension: a randomized clinical trial
Therapeutics to reduce intracranial pressure are an unmet need. Preclinical data have demonstrated a novel strategy to lower intracranial pressure using glucagon-like peptide-1 (GLP-1) receptor signalling. Here, we translate these findings into ...
pmc.ncbi.nlm.nih.gov
November 13, 2025 at 11:30 PM
Reposted by Myrl
meactnet.bsky.social
Call to action: Congress has extended Telehealth until January 31,2026.

This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.

Call now using our call script: www.meaction.net/telehealth

#Telehealth #PwME #MECFS #LongCovid
Text-based graphic in red and white. Simple graphics in each corner include bullhorn, Capitol building, mobile phone, and #MEAction logo. Text: Call Congress now! Make telehealth coverage permanent! We provide a call script to use!
November 19, 2025 at 9:27 PM
Reposted by Myrl
jazzrat2000.bsky.social
Here is help:
The Trevor Project US LGBTQ: (866) 488-7386
US Suicide Prevention Lifeline: (800) 273-8255
LGBT US Hotline: (888) 843-4564
Trans Lifeline: (877) 565-8860
US Runaway Safeline: (800-786-2929)
US Domestic Violence Hotline: (800) 799-7233 PLEASE REPOST, THANKS!!!
November 14, 2025 at 9:50 AM
Reposted by Myrl
renegaderesearch.bsky.social
In 2 days, we'll host our next volunteer session for patients, caregivers, researchers and clinicians who'd like to get involved with Renegade Research!

Register:
us06web.zoom.us/webinar/regi...
November 13, 2025 at 10:40 PM
Reposted by Myrl
putrinolab.bsky.social
Delighted to receive this in the mail yesterday and congrats to Giorgia Lupi on getting this out. THANK YOU for taking time to discuss #LongCOVID and the need for accurate, inclusive and honest representation of the people we collect our data from. Amazing work. 🙏🏻
November 4, 2025 at 1:39 PM
Reposted by Myrl
luckytran.com
Yesterday, history happened at the UN: For the first time hundreds of orgs signed a global pledge declaring that healthy indoor air is a human right.

Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!
People signing the Global Pledge for Healthy Indoor Air at the UN
September 24, 2025 at 10:53 PM
Reposted by Myrl
rippermd41.bsky.social
You’ll also see me talk about indoor air quality #IAQ, masking, and other ways to stay safe from Covid.

I wouldn’t wish #MECFS on anyone. I want to keep you and your loved ones out of this hellscape.

Please wear a well fitting N95/KN95/KF94 in indoor spaces and crowds.
November 10, 2024 at 7:05 PM
Reposted by Myrl
chromatowski.bsky.social
Friends with ME/CFS!

The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!

Takes ~15 mins but you can save and come back if you need a break.

If you could also share this, that would be a huge help!
Can we reach consensus on an ME research case definition?
redcap.is.depaul.edu
September 13, 2025 at 6:15 PM
Reposted by Myrl
ryanmarino.bsky.social
Routine reminder that measles is so contagious that every infected person can be expected to infect 12-18 more people
September 9, 2025 at 3:18 PM
Reposted by Myrl
ryanmarino.bsky.social
Acetaminophen/Tylenol use during pregnancy was not associated with children’s risk of autism, ADHD, or intellectual disability in sibling control analysis. This suggests associations observed in other, less rigorous analyses may have been attributable to familial confounding (aka erroneous finding):
Acetaminophen Use During Pregnancy and Children’s Risk of Autism, ADHD, and Intellectual Disability
This nationwide cohort study with sibling control analysis examines the association of acetaminophen use during pregnancy with children’s risk of autism, ADHD, and intellectual disability.
jamanetwork.com
September 5, 2025 at 10:11 PM
Reposted by Myrl
democratcats.bsky.social
August 27, 2025 at 12:34 AM
Reposted by Myrl
capivarinhas.bsky.social
Capivara se roçando num gatinho cinza rajado e branco num gramado
August 27, 2025 at 4:15 PM
Reposted by Myrl
batemanhornecenter.bsky.social
💙 How care is delivered matters.

Clayton Powers, DPT, shows how small changes like dimmed lights, quiet voices, and empathy, can transform care for ME/CFS & Long COVID.

Compassion is a clinical tool. Use it.

🎥 Watch: bit.ly/46glQZ2
#MECFS #LongCOVID #UofUHealth
Gray slide split into two panels. Left panel reads “Long COVID & Post-Infectious Syndromes ECHO: Back to the Basics—Improving Patient Outcomes” by Clayton Powers, DPT. Right panel is titled “Patient-Centered Communication: The Power of Tone and Body Language” and explains how tone and body language can affect patient trust and safety. A provider’s tone may feel invalidating if not empathetic. Includes illustration of a smiling female doctor and logos for Project ECHO and University of Utah Health. Gray slide with two sections. Left section is titled “Designing the Ideal Visit: Reducing Exertion to Improve Outcomes” and lists ways to reduce patient stress during appointments: allowing patients to lie down, dimming lights, softening voices, and avoiding rushed interactions. Right section is titled “Therapeutic Relationship as a Foundation: Trust is the First Treatment” and emphasizes the importance of rapport, validation, and shared care planning. Includes illustration of a healthcare provider talking with a seated patient and logos for Project ECHO and University of Utah Health. Gray slide with two sections. Left section is titled “Provider Self-Reflection: You Can’t Pour from an Empty Cup” and emphasizes the need for clinicians to emotionally prepare and check biases before appointments to provide compassionate care. An illustration shows a smiling female doctor holding a heart and giving a thumbs-up. Right section is titled “Patients Want to Be Heard: When Listening Becomes Healing” and shares a patient story about the healing power of being listened to. Key message highlighted in bold: “Patients don’t just want medicine—they want care.” Logos for Bateman Horne Center, Project ECHO, and University of Utah Health are included.
July 21, 2025 at 6:51 PM
Reposted by Myrl
raisinguptown.bsky.social
“All our invention and progress seem to result in endowing material forces with intellectual life, and stultifying human life into a material force.”
Speech at anniversary of the People's Paper, April 1856
-Karl Marx
At the same pace that mankind masters nature, man seems to become enslaved to other men or to his own infamy. Even the pure light of science seems unable to shine but on the dark background of ignorance. All our invention and progress seem to result in endowing material forces with intellectual life, and stultifying human life into a material force. Speech at anniversary of the People's Paper, April 1856 Karl Marx
January 13, 2025 at 11:13 PM
Reposted by Myrl
isabelrb.bsky.social
Helps us work to advance MECFS and Long Covid research and care.

My birthday is tomorrow and I am 5% to the goal. If everyone who can, donates just $5 & shares so others can do the same, I’m sure we can raise this by the end of the day.

www.zeffy.com/en-US/fundra...
Isabel Ramírez-Burnett
Remission Biome is a community science, patient and caregiver-led project of the non-profit, decentralized research organization, Renegade Research. We work in collaboration with researchers and clini...
www.zeffy.com
July 1, 2025 at 3:56 PM
Reposted by Myrl
putrinolab.bsky.social
EXISTS whether we like it or not. When we systematically exclude folks from healthcare and healthcare research, we don't just harm them, we harm ourselves through lost opportunity for knowledge. Be curious. Be kind. Be inclusive. It makes you smarter. 🏳️‍🌈🏳️‍⚧️🫶

/end
June 27, 2025 at 9:53 PM