The Real McCoy
@rippermd41.bsky.social
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
Pinned
The Real McCoy
@rippermd41.bsky.social
· Nov 10
New followers here’s an intro on me and what I post about:
I have #SevereMECFS and am housebound. (It sucks)
I have an MD, but don’t practice medicine. Other health problems took me out during residency. (Seriously, my life follows Murphy’s Law)
I have #SevereMECFS and am housebound. (It sucks)
I have an MD, but don’t practice medicine. Other health problems took me out during residency. (Seriously, my life follows Murphy’s Law)
I’m incredibly grateful for my husband.
He never doubts my symptoms. He’s always supportive and willing to take things off my plate so I can rest.
I wish everyone in the #MECFS community had a caregiver like him.
Too many have to go this illness alone often to the detriment of their health.
He never doubts my symptoms. He’s always supportive and willing to take things off my plate so I can rest.
I wish everyone in the #MECFS community had a caregiver like him.
Too many have to go this illness alone often to the detriment of their health.
November 28, 2025 at 4:45 AM
I’m incredibly grateful for my husband.
He never doubts my symptoms. He’s always supportive and willing to take things off my plate so I can rest.
I wish everyone in the #MECFS community had a caregiver like him.
Too many have to go this illness alone often to the detriment of their health.
He never doubts my symptoms. He’s always supportive and willing to take things off my plate so I can rest.
I wish everyone in the #MECFS community had a caregiver like him.
Too many have to go this illness alone often to the detriment of their health.
Reposted by The Real McCoy
A recent study in case you or others want to learn more.
“Adults in the highest quartile of cumulative social disadvantage exhibited an increased odds of experiencing long COVID compared to those in the lowest quartile”—more than 250% higher, in fact.
Long Covid is a class issue.
“Adults in the highest quartile of cumulative social disadvantage exhibited an increased odds of experiencing long COVID compared to those in the lowest quartile”—more than 250% higher, in fact.
Long Covid is a class issue.
Cumulative social disadvantage and its impact on long COVID: insights from a U.S. national survey - BMC Medicine
Background The COVID-19 pandemic has exacerbated health disparities, with long COVID emerging as a major global public health challenge. Although clinical risk factors for long COVID are well-document...
link.springer.com
November 27, 2025 at 10:19 PM
A recent study in case you or others want to learn more.
“Adults in the highest quartile of cumulative social disadvantage exhibited an increased odds of experiencing long COVID compared to those in the lowest quartile”—more than 250% higher, in fact.
Long Covid is a class issue.
“Adults in the highest quartile of cumulative social disadvantage exhibited an increased odds of experiencing long COVID compared to those in the lowest quartile”—more than 250% higher, in fact.
Long Covid is a class issue.
Reposted by The Real McCoy
Thanks for this. I hope you and yours have a good holiday.
Wanted to flag that some people you’re serving here are wearing masks. Poverty elevates risk for long-term disability from Covid while reducing resources needed to deal w/that outcome. Love for you to support better protection for NYC.
Wanted to flag that some people you’re serving here are wearing masks. Poverty elevates risk for long-term disability from Covid while reducing resources needed to deal w/that outcome. Love for you to support better protection for NYC.
NYC ACTION: Contact your NYC Council Member & urge them to co-sponsor Int 0332-2024!
This important bill would provide access to free masks, other PPE, & rapid tests through the mail to New Yorkers.
Email them: actionnetwork.org/letters/free...
Call them: council.nyc.gov/districts
This important bill would provide access to free masks, other PPE, & rapid tests through the mail to New Yorkers.
Email them: actionnetwork.org/letters/free...
Call them: council.nyc.gov/districts
November 27, 2025 at 10:06 PM
Thanks for this. I hope you and yours have a good holiday.
Wanted to flag that some people you’re serving here are wearing masks. Poverty elevates risk for long-term disability from Covid while reducing resources needed to deal w/that outcome. Love for you to support better protection for NYC.
Wanted to flag that some people you’re serving here are wearing masks. Poverty elevates risk for long-term disability from Covid while reducing resources needed to deal w/that outcome. Love for you to support better protection for NYC.
Reposted by The Real McCoy
Without cbd / thc it is very hard to be a person with the amount of pain I live with. Paid for the things we need (internet, diabeetus cat foot, chicken nuggets) but we’re out of meds.
Anything helps: venmo.com/u/rabbitfripp
(rabbitfripp on cash app) #mutualaid #longcovid
Anything helps: venmo.com/u/rabbitfripp
(rabbitfripp on cash app) #mutualaid #longcovid
November 28, 2025 at 3:04 AM
Without cbd / thc it is very hard to be a person with the amount of pain I live with. Paid for the things we need (internet, diabeetus cat foot, chicken nuggets) but we’re out of meds.
Anything helps: venmo.com/u/rabbitfripp
(rabbitfripp on cash app) #mutualaid #longcovid
Anything helps: venmo.com/u/rabbitfripp
(rabbitfripp on cash app) #mutualaid #longcovid
What would a holiday be without an MCAS reaction on top of PEM 🫠
Wasn’t even from the Thanksgiving meal but some GF donut I had for breakfast.
I don’t know how they get away with “spices” on an ingredient list. Not helpful.
Now I have to experiment to figure out which spice was the trigger
#MECFS
Wasn’t even from the Thanksgiving meal but some GF donut I had for breakfast.
I don’t know how they get away with “spices” on an ingredient list. Not helpful.
Now I have to experiment to figure out which spice was the trigger
#MECFS
November 28, 2025 at 3:53 AM
What would a holiday be without an MCAS reaction on top of PEM 🫠
Wasn’t even from the Thanksgiving meal but some GF donut I had for breakfast.
I don’t know how they get away with “spices” on an ingredient list. Not helpful.
Now I have to experiment to figure out which spice was the trigger
#MECFS
Wasn’t even from the Thanksgiving meal but some GF donut I had for breakfast.
I don’t know how they get away with “spices” on an ingredient list. Not helpful.
Now I have to experiment to figure out which spice was the trigger
#MECFS
Reposted by The Real McCoy
Please help my friend, Mem, Mem is a black disabled person who is suffering from MECFS and Long Covid.
They are trying to raise $1133 for rent before mon., Dec 1st. Any late utility or rent will result in termination of their lease.
linktr.ee/torqu111
#MABoost #MutualAid #Thanksgiving #Helpsky
They are trying to raise $1133 for rent before mon., Dec 1st. Any late utility or rent will result in termination of their lease.
linktr.ee/torqu111
#MABoost #MutualAid #Thanksgiving #Helpsky
November 27, 2025 at 10:33 PM
Please help my friend, Mem, Mem is a black disabled person who is suffering from MECFS and Long Covid.
They are trying to raise $1133 for rent before mon., Dec 1st. Any late utility or rent will result in termination of their lease.
linktr.ee/torqu111
#MABoost #MutualAid #Thanksgiving #Helpsky
They are trying to raise $1133 for rent before mon., Dec 1st. Any late utility or rent will result in termination of their lease.
linktr.ee/torqu111
#MABoost #MutualAid #Thanksgiving #Helpsky
Reposted by The Real McCoy
CW: Death, Distressing Content
Devon Live: 'Devon woman killed by train after Long Covid struggle'
'A 58-year-old Teignmouth woman was struggling with debilitating long Covid symptoms when she took her own life, an inquest has heard.'
www.devonlive.com/news/devon-n...
Devon Live: 'Devon woman killed by train after Long Covid struggle'
'A 58-year-old Teignmouth woman was struggling with debilitating long Covid symptoms when she took her own life, an inquest has heard.'
www.devonlive.com/news/devon-n...
Devon woman killed by train after Long Covid struggle
Her heartbroken partner says she was 'let down' by the health service
www.devonlive.com
November 27, 2025 at 3:37 PM
CW: Death, Distressing Content
Devon Live: 'Devon woman killed by train after Long Covid struggle'
'A 58-year-old Teignmouth woman was struggling with debilitating long Covid symptoms when she took her own life, an inquest has heard.'
www.devonlive.com/news/devon-n...
Devon Live: 'Devon woman killed by train after Long Covid struggle'
'A 58-year-old Teignmouth woman was struggling with debilitating long Covid symptoms when she took her own life, an inquest has heard.'
www.devonlive.com/news/devon-n...
Reposted by The Real McCoy
November 27, 2025 at 3:16 PM
Best compliment? Winning this award.
“Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient."
“Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient."
November 27, 2025 at 2:42 PM
Best compliment? Winning this award.
“Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient."
“Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient."
One thing our family learned with #MECFS is if there’s a holiday you enjoy, start it early.
Our energy is limited, but occasionally we can give ourselves more time.
If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
Our energy is limited, but occasionally we can give ourselves more time.
If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
November 27, 2025 at 6:22 AM
One thing our family learned with #MECFS is if there’s a holiday you enjoy, start it early.
Our energy is limited, but occasionally we can give ourselves more time.
If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
Our energy is limited, but occasionally we can give ourselves more time.
If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
Reposted by The Real McCoy
Alt Text isn't the space for seo, secret notes, or inside jokes. It's for people to access media and any context or information that that media has.
If we gon make things right, we gotta find ways to make things right that don't leave us behind.
If we gon make things right, we gotta find ways to make things right that don't leave us behind.
Some are suggesting you deliberately write inaccurate or confusing alt text, because they say this confuses AI scrapers that are analyzing images.
The purpose of alt text is to help people who cannot see the image. Deliberately misrepresenting the image is a gross misuse of alt text. Don't do it.
The purpose of alt text is to help people who cannot see the image. Deliberately misrepresenting the image is a gross misuse of alt text. Don't do it.
November 27, 2025 at 4:22 AM
Alt Text isn't the space for seo, secret notes, or inside jokes. It's for people to access media and any context or information that that media has.
If we gon make things right, we gotta find ways to make things right that don't leave us behind.
If we gon make things right, we gotta find ways to make things right that don't leave us behind.
And I’m talkative again 😑
Just coming out of PEM and I put myself back in it. Seems to be mild again but 🤦🏻♀️
Terrible luck these past two months. Every time I’m about out of PEM something pulls me back in.
Either I’m getting worse at pacing (possible) or my battery shrunk yet again.
#MECFS
Just coming out of PEM and I put myself back in it. Seems to be mild again but 🤦🏻♀️
Terrible luck these past two months. Every time I’m about out of PEM something pulls me back in.
Either I’m getting worse at pacing (possible) or my battery shrunk yet again.
#MECFS
Oh no, I’m getting much more talkative on social media.
I have no idea why but it’s often an early indicator of PEM for me.
All because of a frustrating survey 🤦🏻♀️
#MECFS
I have no idea why but it’s often an early indicator of PEM for me.
All because of a frustrating survey 🤦🏻♀️
#MECFS
November 27, 2025 at 6:05 AM
And I’m talkative again 😑
Just coming out of PEM and I put myself back in it. Seems to be mild again but 🤦🏻♀️
Terrible luck these past two months. Every time I’m about out of PEM something pulls me back in.
Either I’m getting worse at pacing (possible) or my battery shrunk yet again.
#MECFS
Just coming out of PEM and I put myself back in it. Seems to be mild again but 🤦🏻♀️
Terrible luck these past two months. Every time I’m about out of PEM something pulls me back in.
Either I’m getting worse at pacing (possible) or my battery shrunk yet again.
#MECFS
It’s common in New England to see turkeys wandering down the street.
We have one that flies up 40 feet to sit in a tree outside our house.
But I just learned that they went extinct in New England in the mid 19th century.
🧵
We have one that flies up 40 feet to sit in a tree outside our house.
But I just learned that they went extinct in New England in the mid 19th century.
🧵
How Wild Turkeys Took Over New England
You'd be hard-pressed to find a turkey in the Northeast 50 years ago. Now hundreds of thousands roam suburbs where they thrill and bully residents.
www.audubon.org
November 27, 2025 at 5:52 AM
It’s common in New England to see turkeys wandering down the street.
We have one that flies up 40 feet to sit in a tree outside our house.
But I just learned that they went extinct in New England in the mid 19th century.
🧵
We have one that flies up 40 feet to sit in a tree outside our house.
But I just learned that they went extinct in New England in the mid 19th century.
🧵
Another random question:
Did anyone with #MECFS lose their ability to sense they’re overexerting as they got more severe?
I used to have earlier indicators of cognitive exertion but now this is my warning sign 👇
Did anyone with #MECFS lose their ability to sense they’re overexerting as they got more severe?
I used to have earlier indicators of cognitive exertion but now this is my warning sign 👇
Does anyone else’s face light up like a Christmas tree when they overexert?
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
November 27, 2025 at 3:55 AM
Another random question:
Did anyone with #MECFS lose their ability to sense they’re overexerting as they got more severe?
I used to have earlier indicators of cognitive exertion but now this is my warning sign 👇
Did anyone with #MECFS lose their ability to sense they’re overexerting as they got more severe?
I used to have earlier indicators of cognitive exertion but now this is my warning sign 👇
Does anyone else’s face light up like a Christmas tree when they overexert?
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
November 27, 2025 at 3:29 AM
Does anyone else’s face light up like a Christmas tree when they overexert?
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
Bright flushed red cheeks, hot to the touch.
I can’t tell if it’s MCAS response to over exertion or my body’s attempt to bring more blood to my head.
#MECFS
Reposted by The Real McCoy
Another excellent article from @miriametucker.bsky.social covering the panel on disability at the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting. Very helpful insights.
Medscape: 'How to Help With ME/CFS and Long COVID Disability Claims'
By Miriam E. Tucker
www.medscape.com/viewarticle/...
By Miriam E. Tucker
www.medscape.com/viewarticle/...
How to Help With ME/CFS and Long COVID Disability Claims
A disability attorney specializing in chronic disabling conditions and a physician with extensive experience helping patients file claims offer advice.
www.medscape.com
November 27, 2025 at 12:21 AM
Another excellent article from @miriametucker.bsky.social covering the panel on disability at the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting. Very helpful insights.
Reposted by The Real McCoy
Its the final #wishlistwednesday before my tiny narrative game about living with #longcovid launches on steam.
Launching Monday for $1.99.
#indiegamedev #gamedev #indiegame #chronicfatigue
store.steampowered.com/app/4109440/...
Made with the support of deaf and disability arts Festival
Launching Monday for $1.99.
#indiegamedev #gamedev #indiegame #chronicfatigue
store.steampowered.com/app/4109440/...
Made with the support of deaf and disability arts Festival
It's Not You, It's M.E on Steam
A short narrative point-and-click about living with limited energy — and how even the smallest tasks can feel impossible.
store.steampowered.com
November 26, 2025 at 10:04 PM
Its the final #wishlistwednesday before my tiny narrative game about living with #longcovid launches on steam.
Launching Monday for $1.99.
#indiegamedev #gamedev #indiegame #chronicfatigue
store.steampowered.com/app/4109440/...
Made with the support of deaf and disability arts Festival
Launching Monday for $1.99.
#indiegamedev #gamedev #indiegame #chronicfatigue
store.steampowered.com/app/4109440/...
Made with the support of deaf and disability arts Festival
Reposted by The Real McCoy
Does anybody know of a doctor in Vancouver, BC, who treats ME, POTS, etc?
November 27, 2025 at 12:34 AM
Does anybody know of a doctor in Vancouver, BC, who treats ME, POTS, etc?
Reposted by The Real McCoy
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
November 26, 2025 at 6:40 PM
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
Reposted by The Real McCoy
As we work toward our fundraising goal, we will share the glow by lighting up community rewards. Together as a community, we can be a place of respite and maybe even some joy.
DONATE TODAY: meaction.net/donate
DONATE TODAY: meaction.net/donate
November 26, 2025 at 6:24 PM
As we work toward our fundraising goal, we will share the glow by lighting up community rewards. Together as a community, we can be a place of respite and maybe even some joy.
DONATE TODAY: meaction.net/donate
DONATE TODAY: meaction.net/donate
Reposted by The Real McCoy
One of the reasons BlueSky works for me is I can engage in short bursts. Small chunks of text whether reading or writing. I can manage that most days for at least a few minutes here & there & it makes me feel a bit more myself bc I used to be an extrovert & highly social.
There’s a big difference between posting on social media and being well enough to work, socialize or do other activities of daily living.
Social media is a lifeline for most of us because we’re housebound, sometimes bedbound, and suffering from conditions no one else understands
Social media is a lifeline for most of us because we’re housebound, sometimes bedbound, and suffering from conditions no one else understands
November 26, 2025 at 1:04 PM
One of the reasons BlueSky works for me is I can engage in short bursts. Small chunks of text whether reading or writing. I can manage that most days for at least a few minutes here & there & it makes me feel a bit more myself bc I used to be an extrovert & highly social.
Reposted by The Real McCoy
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
November 26, 2025 at 9:33 AM
1) In this new @OpenMedF video, Dr. Chris Armstrong explains his main hypothesis of ME/CFS.
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
He suspects there is an inefficiency in producing ATP (energy), but this isn’t only about mitochondria (the engines), but also about the fuel they get...
Reposted by The Real McCoy
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
November 18, 2025 at 4:40 PM
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
Reposted by The Real McCoy
- He stopped the policy of encouraging flu immunization in Louisiana
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
Controversial Louisiana surgeon general tapped for CDC leadership role
Louisiana Surgeon General Ralph Abraham has spoken against Covid shots and ended mass vaccination campaigns. Now he's in a position to make national health decisions.
www.nbcnews.com
November 25, 2025 at 6:49 PM
- He stopped the policy of encouraging flu immunization in Louisiana
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...