Karyn Bishof
@kbishof.bsky.social
🔵 Founder & Pres. @C19LAP https://www.longhauler-advocacy.org
🔵 Pw/ #LongCOVID, #IACCS, #Disability
🔵 Fmr. Firefighter/Paramedic
🔵 Fmr. Educator, Coach, & Dir. of Athletics
🔵 B.S. (ex science & health promotion)
🔵 #StillCOVIDING #COVIDConscious #Mask
🔵 Pw/ #LongCOVID, #IACCS, #Disability
🔵 Fmr. Firefighter/Paramedic
🔵 Fmr. Educator, Coach, & Dir. of Athletics
🔵 B.S. (ex science & health promotion)
🔵 #StillCOVIDING #COVIDConscious #Mask
On #IndigenousPeoplesDay, remember: the violence never stopped. Colonization just changed its form, from stolen land to stolen children, erased histories, and borders that criminalize the very people this land belongs to. We are still witnessing the same injustice.
October 13, 2025 at 4:22 AM
On #IndigenousPeoplesDay, remember: the violence never stopped. Colonization just changed its form, from stolen land to stolen children, erased histories, and borders that criminalize the very people this land belongs to. We are still witnessing the same injustice.
@SecKennedy our community is dying from #LongCOVID. While its disabling impacts have fractured our national infrastructure, the deaths associated with Long COVID are far under represented & largely ignored. We need urgent leadership & action. We need solutions. We need to educate
October 11, 2025 at 6:26 PM
@SecKennedy our community is dying from #LongCOVID. While its disabling impacts have fractured our national infrastructure, the deaths associated with Long COVID are far under represented & largely ignored. We need urgent leadership & action. We need solutions. We need to educate
The cost of #LongCOVID
This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.
This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.
October 2, 2025 at 8:03 PM
The cost of #LongCOVID
This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.
This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.
Same for the Vaugh guy mentioned
September 5, 2025 at 12:52 AM
Same for the Vaugh guy mentioned
This is absolutely horrible news.
Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research.
Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.
Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research.
Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.
September 5, 2025 at 12:12 AM
This is absolutely horrible news.
Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research.
Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.
Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research.
Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.
You know what worked…
The collaboration and unity that was summer fall and winter 2020.
Bring that back. Drop the ego’s.
#LongCOVID solutions depend on it.
OUR LIVES DEPEND ON IT.
This 2023-present fighting and race to the top of the podium isn’t it.
The collaboration and unity that was summer fall and winter 2020.
Bring that back. Drop the ego’s.
#LongCOVID solutions depend on it.
OUR LIVES DEPEND ON IT.
This 2023-present fighting and race to the top of the podium isn’t it.
August 27, 2025 at 3:06 AM
You know what worked…
The collaboration and unity that was summer fall and winter 2020.
Bring that back. Drop the ego’s.
#LongCOVID solutions depend on it.
OUR LIVES DEPEND ON IT.
This 2023-present fighting and race to the top of the podium isn’t it.
The collaboration and unity that was summer fall and winter 2020.
Bring that back. Drop the ego’s.
#LongCOVID solutions depend on it.
OUR LIVES DEPEND ON IT.
This 2023-present fighting and race to the top of the podium isn’t it.
After two long years of fighting and advocating for myself, my port is in. Hopefully this gets me better access to medical care and quality of life.
#LongCOVID #POTS #Gastroparesis
#LongCOVID #POTS #Gastroparesis
August 23, 2025 at 1:18 AM
After two long years of fighting and advocating for myself, my port is in. Hopefully this gets me better access to medical care and quality of life.
#LongCOVID #POTS #Gastroparesis
#LongCOVID #POTS #Gastroparesis
April 9, 2025 at 12:02 PM
Pretty interesting site www.isidewith.com/candidates/r... on @SecKennedy “stances.” Here’s a highlight of a few. Such disconnect.
March 27, 2025 at 12:54 PM
Pretty interesting site www.isidewith.com/candidates/r... on @SecKennedy “stances.” Here’s a highlight of a few. Such disconnect.
Today #LongCOVID patient advocates were removed from the AHRQ #LongCOVIDCareNetwork at the direction of @HHSGov due to a contract being terminated by #ExecutiveOrder.
The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs
#LongCOVIDAwareness2025 IS A MUST!
The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs
#LongCOVIDAwareness2025 IS A MUST!
March 7, 2025 at 2:55 AM
Today #LongCOVID patient advocates were removed from the AHRQ #LongCOVIDCareNetwork at the direction of @HHSGov due to a contract being terminated by #ExecutiveOrder.
The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs
#LongCOVIDAwareness2025 IS A MUST!
The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs
#LongCOVIDAwareness2025 IS A MUST!
Sometimes I get really mad at research. Like when I’m ignored 5 years ago because “I’m just a patient” on a topic and yet today it’s published and accepted.
An Allele of the MTHFR one-carbon metabolism gene predicts severity of COVID-19
www.medrxiv.org/content/10.1...
An Allele of the MTHFR one-carbon metabolism gene predicts severity of COVID-19
www.medrxiv.org/content/10.1...
March 5, 2025 at 6:07 AM
Sometimes I get really mad at research. Like when I’m ignored 5 years ago because “I’m just a patient” on a topic and yet today it’s published and accepted.
An Allele of the MTHFR one-carbon metabolism gene predicts severity of COVID-19
www.medrxiv.org/content/10.1...
An Allele of the MTHFR one-carbon metabolism gene predicts severity of COVID-19
www.medrxiv.org/content/10.1...
February 17, 2025 at 9:15 PM
Valentine’s Day for many in S. Florida is remembering & mourning the 2018 Marjory Stoneman Douglas School Shooting. As I look back on my pictures & videos, I always cry when I get to the video of the elementary school babies cheering on the highschool babies fighting for their lives. #MSD
February 14, 2025 at 1:02 PM
Valentine’s Day for many in S. Florida is remembering & mourning the 2018 Marjory Stoneman Douglas School Shooting. As I look back on my pictures & videos, I always cry when I get to the video of the elementary school babies cheering on the highschool babies fighting for their lives. #MSD
Facebook / COVID-19 Longhauler Advocacy Project also has private groups which are safe, moderated, and meaningful for the #LongCOVID community.
We have our main group www.facebook.com/share/g/1FSN...
And its 60 chapters www.longhauler-advocacy.org/team-community
We have our main group www.facebook.com/share/g/1FSN...
And its 60 chapters www.longhauler-advocacy.org/team-community
January 19, 2025 at 4:41 AM
Facebook / COVID-19 Longhauler Advocacy Project also has private groups which are safe, moderated, and meaningful for the #LongCOVID community.
We have our main group www.facebook.com/share/g/1FSN...
And its 60 chapters www.longhauler-advocacy.org/team-community
We have our main group www.facebook.com/share/g/1FSN...
And its 60 chapters www.longhauler-advocacy.org/team-community
Special Considerations in People who are Immunocompromised: COVID-19 Infections.
www.ncbi.nlm.nih.gov/books/NBK570...
www.ncbi.nlm.nih.gov/books/NBK570...
January 10, 2025 at 5:02 AM
Special Considerations in People who are Immunocompromised: COVID-19 Infections.
www.ncbi.nlm.nih.gov/books/NBK570...
www.ncbi.nlm.nih.gov/books/NBK570...
Lupus, Sjogren’s, Autonomic Dysfunction + can affect the eyes & are common in #LongCOVID.
2 yrs ago, Sjogren’s caused corneal abrasions that took my vision for a week+. Recently, my intermittent blindness was deemed neuro, not eye/lupus related. No tunnel vision,Tx systemically.
buff.ly/3ZOwb9K
2 yrs ago, Sjogren’s caused corneal abrasions that took my vision for a week+. Recently, my intermittent blindness was deemed neuro, not eye/lupus related. No tunnel vision,Tx systemically.
buff.ly/3ZOwb9K
January 8, 2025 at 3:30 PM
Lupus, Sjogren’s, Autonomic Dysfunction + can affect the eyes & are common in #LongCOVID.
2 yrs ago, Sjogren’s caused corneal abrasions that took my vision for a week+. Recently, my intermittent blindness was deemed neuro, not eye/lupus related. No tunnel vision,Tx systemically.
buff.ly/3ZOwb9K
2 yrs ago, Sjogren’s caused corneal abrasions that took my vision for a week+. Recently, my intermittent blindness was deemed neuro, not eye/lupus related. No tunnel vision,Tx systemically.
buff.ly/3ZOwb9K
Updated Guidelines for Eosinophilic Esophagitis which is also present in Long COVID.
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
January 8, 2025 at 3:29 PM
Updated Guidelines for Eosinophilic Esophagitis which is also present in Long COVID.
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
Updated Guidelines for Eosinophilic Esophagitis which is also present in Long COVID.
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
January 8, 2025 at 3:29 PM
Updated Guidelines for Eosinophilic Esophagitis which is also present in Long COVID.
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
If you have issues swallowing, feel like things are stuck in your throat, have chronic sore throats, have reflux/ GERD- you should look into EoE. (I also have this).
www.patientcareonline.com/view/america...
