Myrl
@myrljohnson.bsky.social
Fan of books, movies, family, friends, recipes, beaches, mountains
Always looking for information and inspiration; #pwME #pwMCAS
Ally
Try to be of service
Always looking for information and inspiration; #pwME #pwMCAS
Ally
Try to be of service
Reposted by Myrl
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...
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
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...
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...
Reposted by Myrl
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
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
November 19, 2025 at 9:27 PM
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
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
Reposted by Myrl
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!!!
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
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!!!
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!!!
Reposted by Myrl
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...
Register:
us06web.zoom.us/webinar/regi...
November 13, 2025 at 10:40 PM
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...
Register:
us06web.zoom.us/webinar/regi...
Reposted by Myrl
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
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. 🙏🏻
Reposted by Myrl
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!
Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!
September 24, 2025 at 10:53 PM
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!
Healthy indoor air is a key tool for preventing pandemics, building climate resilience, and increasing health equity. We need it everywhere!
Reposted by Myrl
Reposted by Myrl
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!
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
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!
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!
Reposted by Myrl
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
Routine reminder that measles is so contagious that every infected person can be expected to infect 12-18 more people
Reposted by Myrl
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
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):
Reposted by Myrl
Reposted by Myrl
Reposted by Myrl
💙 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
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
July 21, 2025 at 6:51 PM
💙 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
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
Reposted by Myrl
“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
Speech at anniversary of the People's Paper, April 1856
-Karl Marx
January 13, 2025 at 11:13 PM
“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
Speech at anniversary of the People's Paper, April 1856
-Karl Marx
Reposted by Myrl
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...
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
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...
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...
Reposted by Myrl
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
/end
June 27, 2025 at 9:53 PM
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
/end
Reposted by Myrl
My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social
Donate to my birthday fundraiser if you are able. Any amount helps
tinyurl.com/Renegage-Res...
Donate to my birthday fundraiser if you are able. Any amount helps
tinyurl.com/Renegage-Res...
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...
tinyurl.com
June 30, 2025 at 11:47 AM
My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social
Donate to my birthday fundraiser if you are able. Any amount helps
tinyurl.com/Renegage-Res...
Donate to my birthday fundraiser if you are able. Any amount helps
tinyurl.com/Renegage-Res...
Reposted by Myrl
failure and mistakes are not personal failings, they're data
June 18, 2025 at 4:33 AM
failure and mistakes are not personal failings, they're data
Reposted by Myrl
If you do not get put of your comfort zone and get challenged by stuff, you will not learn new things. Its basic psychology. Cognition grows from using your mind to decode and understand things as you work yourself through a text, a motor, a construction, doing a sport, whatever.
June 18, 2025 at 11:19 AM
If you do not get put of your comfort zone and get challenged by stuff, you will not learn new things. Its basic psychology. Cognition grows from using your mind to decode and understand things as you work yourself through a text, a motor, a construction, doing a sport, whatever.
Reposted by Myrl
Shortcuts to results give you results but no understanding of why that is a result and if it can be sound / true! Using AI makes us more stupid, simply.
June 18, 2025 at 11:20 AM
Shortcuts to results give you results but no understanding of why that is a result and if it can be sound / true! Using AI makes us more stupid, simply.
Reposted by Myrl
Article in The Atlantic by Ed Yong | "Fatigue Can Shatter a Person"
"Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.”
Read here 👉 ow.ly/QpLh50W6hGL
"Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.”
Read here 👉 ow.ly/QpLh50W6hGL
Fatigue Can Shatter a Person
Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.
ow.ly
June 9, 2025 at 3:00 PM
Article in The Atlantic by Ed Yong | "Fatigue Can Shatter a Person"
"Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.”
Read here 👉 ow.ly/QpLh50W6hGL
"Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.”
Read here 👉 ow.ly/QpLh50W6hGL
Reposted by Myrl
6. If you see someone in a mask, put one on too.
If someone is masking, they’re likely either sick, high-risk, or proactively avoiding covid. In all cases, joining them is wise!Putting on a mask in the presence of another masked person is a great act of solidarity and kindness.
If someone is masking, they’re likely either sick, high-risk, or proactively avoiding covid. In all cases, joining them is wise!Putting on a mask in the presence of another masked person is a great act of solidarity and kindness.
June 17, 2025 at 2:38 AM
6. If you see someone in a mask, put one on too.
If someone is masking, they’re likely either sick, high-risk, or proactively avoiding covid. In all cases, joining them is wise!Putting on a mask in the presence of another masked person is a great act of solidarity and kindness.
If someone is masking, they’re likely either sick, high-risk, or proactively avoiding covid. In all cases, joining them is wise!Putting on a mask in the presence of another masked person is a great act of solidarity and kindness.
Reposted by Myrl
Please don't be a person who *only* wears masks to protests. Where them consistently to make spaces safer for immunocompromised people and chronically ill people, those with other disabilities and everyone who could become disabled (or dead) after their next infection.
Masks are under serious threat at being banned widely due to politicization. This would be a public health disaster. If you are only wearing a mask at protests, please consider also wearing them elsewhere. The more people mask, the more we normalize masks and protect them against bans.
June 15, 2025 at 3:52 PM
Please don't be a person who *only* wears masks to protests. Where them consistently to make spaces safer for immunocompromised people and chronically ill people, those with other disabilities and everyone who could become disabled (or dead) after their next infection.
Reposted by Myrl
in other news, we have this new feeder with a camera and i think this is a calliope hummingbird
"Due to their limited range and size, Calliope Hummingbirds are considered a rare and sought-after species among birdwatchers, making each sighting a memorable experience." avibirds.com/hummingbirds...
"Due to their limited range and size, Calliope Hummingbirds are considered a rare and sought-after species among birdwatchers, making each sighting a memorable experience." avibirds.com/hummingbirds...
June 14, 2025 at 3:36 PM
in other news, we have this new feeder with a camera and i think this is a calliope hummingbird
"Due to their limited range and size, Calliope Hummingbirds are considered a rare and sought-after species among birdwatchers, making each sighting a memorable experience." avibirds.com/hummingbirds...
"Due to their limited range and size, Calliope Hummingbirds are considered a rare and sought-after species among birdwatchers, making each sighting a memorable experience." avibirds.com/hummingbirds...
Reposted by Myrl
Check out our #Clinician's Roundtable on the use of stimulants in #orthostatic #intolerance with Dr. Peter Rowe!
bsky.app/profile/rene...
#RenegadeResearch @renegaderesearch.bsky.social @RenegadeRes
bsky.app/profile/rene...
#RenegadeResearch @renegaderesearch.bsky.social @RenegadeRes
Renegade Research (@renegaderesearch.bsky.social)
▶️ Hear what Dr. Peter Rowe says regarding the use of stimulants in orthostatic intolerance! Watch this clip from our Renegade Research #Clinician Roundtable. 🔗…
bsky.app
June 7, 2025 at 11:30 PM
Check out our #Clinician's Roundtable on the use of stimulants in #orthostatic #intolerance with Dr. Peter Rowe!
bsky.app/profile/rene...
#RenegadeResearch @renegaderesearch.bsky.social @RenegadeRes
bsky.app/profile/rene...
#RenegadeResearch @renegaderesearch.bsky.social @RenegadeRes