Karyn Bishof
@K_Bishof
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B.S., Fmr. FF/PM & Educator Pw/ #LongCOVID , #Indigenous , #Mom , Founder & President @C19LH_Advocacy (views/posts are my own) admin @longhauler -advocacy.org
Boca Raton, FL
Joined September 2021
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This is a *small* picture into life w/
#LongCOVID
. These are my diagnoses at 4 years post
#COVID
infection March 2020.
#COVID
is not your typical “cold or flu,” & carries systemic, long-term health consequences w/ infection.
What’s your survival plan if this becomes you?
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It’s not rocket science. Once again- it’s covid. Vets are now treating the dogs getting sick across the country with paxlovid, and noting their owners recently had COVID infections. - no shit
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🧵
For all of middle school, my son did virtual school to avoid getting
#COVID
for the first time, and avoid reinfecting me, struggling severely with
#longCOVID
+.
After 2 weeks of being back in person, he now has COVID, and I am devastated. 1/5
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Just tried to get paxlovid for my son, who has Medicaid. Guess what? “Insurance only covers it once within a 365 day period,” but the kicker also- you can’t pay OOP for it if on Medicaid or Medicare- so therefore- you do not have access to
#paxlovid
if reinfected w/in a year.
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Reflecting on my non mask wearing nurse yesterday telling me “I like your mask, it’s fashionable, like during COVID times.”
Me:
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If I end up getting it too, I can’t take
#paxlovid
because I take
#ivabradine
for my COVID induce
#POTS
. I’m already a disabled single mom, and sadly, my son is MY caretaker. I cannot express how besides ourselves we are that after everything, here we are. 😞 5/5
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This reinfection has destroyed what was left of my GI tract. I’m down 15lbs, still cannot eat and cannot even tolerate water because of the severe pain I am in. The ER was useless, have a virtual with my GI doc Tuesday, but I’m on a liquids diet that I keep throwing up. 1/
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Can we start identifying the attorneys willing to take on these types of cases? They are coming in droves, watch.
At Chicago O’Hare and just got told I can’t enter a restaurant bc I had a mask on. With Covid at its highest rate in months. Make it make sense.
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I rushed to get him an actual PCR (get your proof, you’ll need it), & it was a fight to get him paxlovid, though we got it & a few other things. I’ve taped off my room, made him a 5 day snack, hydration & med prep tray, & I’m just here livid, defeated and hoping for the best. 4/
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We are in palm beach county
#florida
🙄 & he has just entered high school. According to him, a bazillion people are sick, not masked & still at school, including one of his teachers this week. He is also on an overcrowded bus where kids have to sit on the FLOOR, also no masks. 3/
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Lucira home test +
PCR at urgent care -
Taken on the same day hours apart. What was the difference?
On the Lucira, I swabbed my sons throat.
At urgent care, they swabbed his nose (which most do incredibly incorrectly).
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Doing bloodwork at quest, and the *masked tech* said, “I tell people about you, and what happened to you all the time. People don’t believe it, they just don’t get it.”
💜 her to pieces.
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He came home today saying he didn’t feel good and was super stuffy & congested, sneezing, and said his throat & nose were itchy and burning. I immediately seabed him, and low and behold, he was positive. Currently, I am negative but I anticipate that will change in a few days 2/
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I’ll repeat.
MASKING is the best way to prevent
#COVID
,
#LongCOVID
, death, & disability.
Vaccination helps protect against “severe acute illness & hospitalization.” If you get COVID- you can still develop Long COVID, disability, & death.
#MaskUp
@KathyHochul
@RayCooperNC
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No one is listening, let alone prepared for, the
#cancer
epidemic we’re about to see from
#COVID
-infections, especially in the
#LongCOVID
population. For those of us on the ground, we’ve been screaming this for a few years now as we see this trend spread throughout the community.
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A few years ago
@halsey
discussed having COVID. In 2022, they disclosed they had Ehlers-Danlos syndrome, Sjogren's syndrome, mast cell activation syndrome, & postural orthostatic tachycardia syndrome. Now, they are disclosing they have Lupus and Leukemia.
🚩for
#LongCOVID
.
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Sat. marks 4 years that I have not been a firefighter/ paramedic anymore due to
#LongCOVID
+, & while my medic license expired already, my fire one expires Sat. Everything I fought to accomplish- gone. Even if better, I can never be a FF ever again. it’s astronomically depressing
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I’m sorry but why are you practicing medicine? This statement is outrageous.
“Generally speaking, most parents should not be worried that their children will develop
#longCovid
, said Dr. Stephen Freedman, a professor of pediatrics and emergency medicine at the
1/3
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PCR/RAT studies appear to *miss 75% of reinfections* compared with the addition of serology.
Our testing sucks & we DO NOT have the tools. We need more accurate & accessible testing & reporting & massive reuptake of mitigation efforts to prevent spread.
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I shouldn’t be afraid to spend time with my son because of what he may be bringing home from school. But I am, everyday, because I’m immunocompromised, his only parent, and already disabled from
#COVID
and
#LongCOVID
. This should not be life.
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Today, on
#LongCOVIDAwarenessDay
, I hit my 4 yr
#COVID
anniversary, which resulted in me becoming
#disabled
from
#LongCOVID
as a healthy, 30 yr old firefighter/ paramedic & single mom. Here is my story& todays feelings. 1/18
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Bringing
#YallMasking
to other platforms. It’s time to normalize and encourage protecting oneself and others. This mass participation can change the tide!
#LFG
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@NIHDirector
The pandemic is still ongoing. this messaging is costing people their lives in more way than one.
#LongCOVID
#death
#disability
.
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@weeklyshowpod
Hi Jon! I’m a former firefighter paramedic who got COVID & developed
#LongCOVID
, & became disabled. I served on the
@theNASEM
committee that developed & just released the new definition & incredible report on Long COVID. Would love the opp to educate on this public health crisis!
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Todays posts in C19LAP
1- my husband died today. He had Covid a year ago with a stroke and had continued health issues since but seemed to be doing good.
2- my husband left me today because of my
#LongCOVID
.
People need tools and solutions, now.
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Being admitted. Vomiting up blood (mildly) now too. CT with contrast done and nada showing.
This reinfection has destroyed what was left of my GI tract. I’m down 15lbs, still cannot eat and cannot even tolerate water because of the severe pain I am in. The ER was useless, have a virtual with my GI doc Tuesday, but I’m on a liquids diet that I keep throwing up. 1/
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#LongCOVID
is from
#COVID
infection and only from a
#COVID
infection.
Long COVID is not from vaccines or vaccine injury.
Vaccine injury is vaccine injury.
Stop with the BS on every
#LongCOVID
post like “it’s the jab” “how many shots have you taken” and other stupid shit.
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Wasn’t this a community moral boosting trend?
I am DISGUSTED at even the actions by some participating in
#YallMasking
attacking other people posting & sharing for wearing a different or less effective mask than you. Equity plays a ginormous role in access. Support these ppl.
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have access too. I’d rather give birth 10 more times without an epidural than continue dealing with this pain. Somethings got to give. It’s been 17 days of extended hell. 3/
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This
#COVID
reinfection has landed me in the hospital for what I suspect is Pancreatitis. Tests & meds, was told be admitted for endoscopy which always leaves me w/ asp pneumonia or go home w/ meds. Went home w/ meds which aren’t working bc my son was home alone +. Mistake.
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Waiting for an ultrasound to be ordered for a suspected blood clot in my thigh 😑
#LongCOVID
the four year gift that keeps giving.
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This is the best introduction and words on
#longcovid
said by any public official ever. I am balling my eyes out seeing this finally said out loud. Thank you
@SenSanders
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If I dare try solids, they are literally getting stuck where I have the pain, and I throw up. I’ve been off all of my meds because I can’t keep anything down, can’t sleep, barely able to stand at the point where I need continuous IV hydration and IV meds that I don’t 2/
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OUR BILLBOARDS ARE UP!
More to come!
Our
#LongCOVID
#Billboards
are live!
If you are near Everett MA, Delray Beach FL (pictured below), Arvada Colorado, or Ft Wayne IN you can go see the billboards in person Friday (today) from 3-6pm, and Saturday and Sunday from 1-3pm. Send us a picture! We have more coming so
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I’m seeing a lot of people who mask disappointed they got infected/ reinfected.
- quality of mask matters
- two way masking matters
- COVID can enter theough eyes
- viral load matters
- “but I didn’t wear it just this one time” matters
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I am 2 weeks post reinfection.
Neuropathy- worse
Autonomic issues- worse
Fatigue- worse
GI pain worse
Muscle and joint pain- worse
Appetite- non existent, ⬇️ 15lbs
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University of Calgary Cumming School of Medicine. “I don’t get asked a lot, if at all, about ‘Is my child now at risk of developing long Covid?’ after we diagnose them with an acute infection,” he said. “And I think that’s appropriate.”
What a disservice to our kids.
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I’ve just been DENIED
#SSDI
after having already been out of & unable to work for 18.5 months. I filed for over 10 conditions, majority of them chronic or life long & disabling on their own, let alone as a collective! This is cruel.
#LongCovid
is supposed to be covered now. 1/7
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I waited 8 months to see a new neuro in hopes of getting IVIG. instead I got “you know one of the things that help these types of syndromes are 1) sleep, 2) monitoring diet and calories, 3) exercise.”
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I know there is only a handful of
#LongCOVID
advocates who were able to attend the hearing, but please know, every time you do a simple gesture such as clap when
#LongCOVID
is mentioned, I cry. TY for showing up for the millions of us. <3
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Well, after a positive ANA and further follow up with more specific testing, my
#Lupus
tests were + 🤦🏻♀️ I’ve only been advocating saying I suspect this for at least 2.5-3 years. I also now have high platelets seen.
#livingontheedge
#LongCOVID
- the gift that keeps on giving.
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Today marks my 2 year
#covidversary
. For two years I have been sick, unable to work, & unable to participate in normal, daily life. In the article below, I emphsize the need to discuss
#LongCovid
in terms of years vs weeks & months, incl why that matters.
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Has anyone else experienced this?! Have NOT heard this reported before.
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People can’t even get
#paxlovid
/
#antivirals
as it is now & providers refuse to prescribe it to most because of misinformation about “mild cases” - completely negating the reality of
#LongCOVID
&
#viralpersistence
. But yes let’s make them even more inaccessible.🤬
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Posting again, my labs over the last 4 years since COVID infection resulting in Long COVID, as I think it is a tremendous picture into what COVID does to the immune system, which can better allow people to comprehend the cascading effects of this impact to the immune system. 1/2
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Nearly four years in, with millions disabled, and the patient community is still needing to educate the clinicians. At some point our govt needs to issue mandatory provider education (CME @ recert/ licensing) on a mass disabling event impacting tens of millions in US alone…
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Disappointed is an understatement. 🧵
I will never understand how people with IACCs, chronic illness, or disabilities, or those who lead the research in them & provide clinical care, don’t mask during a continuing public health crisis esp around other highly vulnerable ppl. 1/
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@ChrisAlvino
Option 1: remember back to when you were bent over a toilet bowl or on the bathroom floor so sick that you literally just wanted to die for it to stop
Option 2: a level of fatigue I can only compare to the final seconds of consciousness before anesthesia
For four years
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LOL I got “banned” from another “long covid support group” today & called a troll by their admin for commenting “no, dont do it” to someone asking about taking ivermectin. The group is run by “clinicians” who think posting a study about “positive emotions” is beneficial for us.☠️
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🧵
@DelrayMedCenter
is the worst hospital to go to for care apparently. After a COVID reinfection I’ve been dealing with numerous issues, some new, some exacerbated. After 3 weeks of extreme abdominal pain, and vomiting and inability to eat I came to the ER for a 2nd time. 1/
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So thankful to
@SenSanders
and his staff! Thank you for seeing us, and supporting us. Thank you for helping emphasize the long-term impacts of
#COVID
.
#LongCOVIDAD24
@SenSanders
,
@GOPHELP
Chairman, &
@C19LH_Advocacy
, introduce
#SenateResolution590
to recognize March 15th as
#LongCovidAwarenessDay
Press Release:
Resolution:
Get Your Senators Support:
#LongCOVIDAD24
1/4
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And officially got the lupus diagnosis after seeing rheum post labs and increase in symptoms. Starting hydroxychloroquine 🤦🏻♀️ for those that ask the signs- malar rash, skin rash, extreme hair loss, extreme joint pain, extreme fatigue (more than normal). Labs…
Well, after a positive ANA and further follow up with more specific testing, my
#Lupus
tests were + 🤦🏻♀️ I’ve only been advocating saying I suspect this for at least 2.5-3 years. I also now have high platelets seen.
#livingontheedge
#LongCOVID
- the gift that keeps on giving.
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@MeetJess
😂 most helpful treatment for my
#LongCOVID
. It’s also a mast cell stabilizer. I’m willing to also bet this was focused on smoking and acute pulmonary complications vs cannabis via other / all routes. Def want to see comorbidities measured as well as access to treatment
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#Thread
Being high risk sometimes means doctors become afraid to treat you. I am going to go off on a tangent on several things on this thread so - hear me out. There is immense privilege in the messaging by the
@CDCDirector
regarding easy access to testing & treatment. 1/17
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These also get reported if you take the time to go in and log it.
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This fits perfectly with our data showing 44% of Longhaulers are complete unable to work. Another 51% have been reduced to working PT. 5% are to work 100%.
Over 30% of people who are unemployed said their top cause was their physical health (an increase from March).
#LongCovid
Another 15% said it was their mental health (curious how many of these are healthcare workers).
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@StashColTV
Brain fog as a term does such a disservice to what we experience, which is cognitive impairment.
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The CDC has lost all public confidence & continues to ignore THEIR OWN DATA on the devastating impacts of Long COVID. Knowingly pushing disability & death onto millions of Americans cannot be an action we allow from our public health & safety officials. it��s unconscionable.
The CDC is claiming that shortening isolation policies makes it more practical for workers because they can get back to work more quickly. But in reality, it does the opposite because it makes workers more sick.
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The universes work baffles me.
I had posted about yday being the expiration of my firefighter certification, with my medic having expired earlier.
Today I hear screams outside & end up saving the life of my 2 year old neighbor choking & not breathing.
Dysautonomia & PTSD 🚀
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@PutrinoLab
This has been, besides my health itself, my
#1
battle since getting sick Mar 2020. Workers comp, even as a 1st responder, w/ proof of testing ONLY because I was a 1st responder- & I’m still fighting for over 82k in backpay. Why? It’s… psychosomatic/prove conditions from COVID 🤬
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Just a huge should out to the
#longcovid
community today. Lots to say but I am completely out of spoons and just wanted to say thanks to those involved in this hearing. There is a lot more work to do and more to push for and it doesn’t end here.
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Me too. March 2020 longhaulers disproportionately represent the entire long covid community and in comparison to “high waves” still leave the % of LH in the dust. WHY?
This is just a note to say I've had long covid for 19 months and I'm still profoundly disabled and there is still no decent treatment. The new case numbers keep going up so more people will join me in hell 🔥
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This is a question for those w/
#LongCOVID
who have/ are receiving
#chemo
.
Did you experience Long COVID symptom relief after/between chemo infusions?
I have a member & friend undergoing chemo & post infusion 1, her smell has returned & her Autonomic Dysfunction is near gone.
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@CovidSolidarit1
A useless ct without contrast and bloodwork they told me was normal, which after I requested the results on my own- were in fact- not normal 🙄
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Just wondering how many in the
#LongCOVID
&
#disability
community would like to “have fun” and “be able to work” let alone “have fun at work.”
Such a fun week at CDC celebrating National Have Fun at Work Day. Campus walks, yoga classes and live music from CDC teammates! It was a delight to see so much joy throughout campus!
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@MVGutierrezMD
This is everyday. We have physicians join our group as patients and go “I never knew about these things before.” We need *mass & mandatory* clinician education.
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@inkblue01
No it’s because tests suck.
My son’s on Covid day 7.
I only trust Lucira & felt an ex of why was warranted.
Lucira is +
Abbott (barelllllllllly can be seen if you squint)
(Same time, sample, method)
The majority of people can’t afford multiple quality tests & miss positivity & contribute to mass spread.
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Just your indigenous
#LongCOVID
advocate reminding you about history and here to emphasize historians called this epidemic genocide because action could have been taken to prevent it, but they opted not to take action. I present to you fall 2019-present. History always repeats.
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Not sure how throwing up blood, inability to eat/ drink, having 17 dif labs out of range, & being high risk & immune comp makes a doc go “all good, you can go home”. Appalled by the “services” at this hospital & will def be making a formal complaint. Wanna survive as a 1 mom- End
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@Lvincentdoc
No, and there’s no mandatory - or any- education coming from the top down.
@C19LH_Advocacy
had repeatedly called for mandatory provider education at recert/ relicensing, and in med schools. but 🤷🏻♀️…
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@NIHDirector
Stop the Energize study. It’s a waste of money and time for patients who don’t have time…redirect funds to something actually worthy and that can produce treatments and solutions.
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People who are not
#LongCOVID
patients, and who are not *consulting and collaborating* with
#LongCOVID
patients, should not be speaking for
#LongCOVID
patients.
Thanks for coming to my
#TedTalk
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When you are a prominent scientist w/ in the
#LongCOVID
&
#COVIDConscious
community that has been masking & leading by example 24/7, then stop, the thousands who looked to you for this leadership & camaraderie feel defeated, alone, & lose respect. The comments are heartbreaking.
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It was an honor to serve on the
#NASEM
committee tasked with developing the definition of
#LongCOVID
. I hope that I have done you all proud.
Here is my statement on the definition & report 1/3
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Post Covid I have developed severe endothelial dysfunction which is currently being studied by my Myocarditis doc, who is also someone super interested in using stem cells to reverse this. Just shared this study with their team.
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There are literally ZERO options for
#Longhaulers
who cannot work. No financial assistance programs, no unemployment, no short or long term disability, no workers Comp or they have all been exhausted. 2/7
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“We have easily accessible treatment for
#COVID19
” meanwhile there are providers and practices that don’t prescribe
#FDA
approved medications because they simply don’t want to and don’t feel like it and the patients and the ones who suffer.
@CDCDirector
@CDCgov
@US_FDA
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If you have recently tried to access
#Paxlovid
due to *an acute*
#COVID
infection, we’re you able to easily gain access to it? Please feel free to expand on your experience in the comments, especially those who really had to put effort in or who were denied access.
Accessed, w/ low effort
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Accessed, w/ med effort
70
Accessed, w/ high effort
37
Unable to access
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@NikkiFried
How about the
#Longhaulers
who “survived but are not living”, those of us disabled now, unable to work, losing everything we’ve worked for our entire lives, unable to provide for our families, especially us single parents. The #’s are astronomical yet no helps coming. Speak up!
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I called today and guess what… the script was already “ready for pick up”- it’s in hand! I asked for the manager again and was told they would need to call me back (again) but I want answers!!! How many others have experienced this and have no access?! It’s not okay.
Just tried to get paxlovid for my son, who has Medicaid. Guess what? “Insurance only covers it once within a 365 day period,” but the kicker also- you can’t pay OOP for it if on Medicaid or Medicare- so therefore- you do not have access to
#paxlovid
if reinfected w/in a year.
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Jeanne Pinder, a long-hauler and journalist, has been trying to write about life insurance and Long Covid would like to speak to people impacted by this! She may reach out to individuals on this thread - or feel free to email her at jeanne
@clearhealthcosts
.com.
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Well, after running this test for nearly 4 years now, and post second infection in August, guess who now has a positive ANA. 🤌🏼
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I will add that the majority of cancers being diagnosed are blood cancers like lymphomas and leukemias, which makes a lot of sense in Long COVID.
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@HoskingPoet
People run COVID tests daily that are negative but they actually have COVID. These tests are going to be even less sensitive on pets/ dogs.
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@CDCgov
You are promoting mass disability and death. There is not an ounce of credible science that supports this decision. In fact, you have the correct science & refuse to act on it. You are responsible for millions of deaths and tens of millions left with chronic illness & disability.
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I tested positive on the 30th after my son on the 25th, and it took 5 doctors, and nearly an entire day to find someone unafraid to treat someone high risk with
#longCOVID
+
#reinfected
. BUT according to all current public messaging, we have
#easy
access to treatment. 3/17
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Hi all- I am at the end of my rope mentally and physically with the lack of sleep I get. It’s been atrocious for years now but lately I am truly not able to stay asleep for even 5 minutes. I toss and turn constantly waking every few minutes and…1/
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A thread to be built upon:
1. I cannot express how great it is to hear that people are already sending this to their clinicians who are actually rapidly replying to patients stating what a great resource it is to finally have.
#2024NASEMLongCOVIDDefinition
#ProgressforLongCOVID
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@ahandvanish
This only accounts for people 16+ and documented positive cases. Multiply by - a lot.
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This is what the disability system looks like. 10 chronic debilitating conditions and this is their reason for denial. if your condition gets worse or keeps you from working apply again? WTAF that’s why I applied now
#fblc
#LongCovid
#longhauler
@POTUS
@HHSGov
@KantorKantor
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