Imagine doing all the work that elite athletes do to improve their performance by microunits, the superstitious rituals to calm the mind, the pseudoscience & disordered eating & exercise, and NOT wearing a mask during a pandemic, risk catching ANYTHING & missing your shot at 🏅
So much wrong with this. He had shortness of breath & chest pain. C19 + chest pain, esp w/exertion, is concerning. Rest during & after C19! Then the secrecy when contagious: “We were trying to keep this close to the chest...We didn’t want everybody going into a panic..." Awful.
I don’t know who needs to hear this but disabled high risk people have mental health and human connection needs too. We just don’t have the body privilege to ignore the risks in going out to bars and restaurants and concerts.
#HighRiskCovid
A summer COVID-19 surge is making its way through the region. It's time to mask up while traveling and take extra precautions, public health officials say.
Y’all my spouse tested positive on rapids (a good indicator of infectiousness) FOR 22 OF THE LAST 28 DAYS. He’s still PCR positive. He took Paxlovid from days 2-7, got one negative test then rebounded hard for two weeks.
@cdph
you would have him infect his entire office?!
PLEASE - if you get COVID, do everything your personal privilege and situation allows to minimize your exertion over the weeks after you think you’re better. You do NOT want
#LongCovid
and the only thing that seems to mitigate risk once infected is REST.
It’s the Covid guys.
I had a series of strokes in 2020 after getting Covid. I was a runner for over a decade. The morning I got my first Covid symptoms I had done my usual 3 mile run.
Covid is airborne and a neurovascular disease.
Doctors say they are seeing an alarming number of seemingly healthy younger patients having heart attacks. Now doctors at Mount Sinai are tracking patients to see if they can uncover the new risk factors behind the trend.
@annenbcnews
reports.
Hello yes I had a series of mini strokes (transient ischemic attacks) in the weeks after getting COVID-19. I was 33.
I was a runner for nearly 15 years before I got sick. I did not have any signs of cardiovascular disease.
This virus simply shreds your blood vessels.
COVID and strokes. By now, evidence is quite clear that SARS-COV-2 can attack all organs of your body, including your brain. This is a reminder that everyone should be doing everything to protect themselves from infection/reinfection
Here’s a quick 🧵
I wish we’d be honest that COVID protections were only lifted bc capitalism demands a permanent underclass (essential workers) to create a fantasy world for a complacent middle class so they do political lifting for politicians and billionaires.
TDs and Senators are being asked to take an antigen test 24 hours before US President Joe Biden’s joint Oireachtas address as part of strict rules for politicians.
But but but I thought Covid was over?
Sir Paxlovid is not remotely available to most, and certainly not for those most at risk of death or disability, including people of color and poor people without health insurance.
The President tested positive for COVID today
As I wrote recently, we are in the middle of a typical summer wave
Given how much the President is on the road, meeting people, shaking hands, etc., this is no surprise
The good news is that he keeps up with his vaccines and is
“the psychological toll of trying to keep ourselves safe with no institutional support, and, in fact, quite a bit of institutional propaganda that we are being hysterical, is an ongoing source of trauma. It feels like I’m screaming into the void.”
📣My latest column for
@TeenVogue
on the latest surge, how high risk people have been abandoned by the Biden administration, & why I won’t be voting this election w/ quotes from
@tinu
@AngelaMSWinCA
&
@Christine_ScD
Studies show that one of the most effective ways to encourage people to take prevention measures is to talk about
#LongCOVID
, so it’s bad that the CDC went out of its way to omit masks on its Long COVID page.
The vax & relax left invited this and disabled and high risk people (including poor and working class BIPOC) will always pay the price for leftist magical thinking and entitlement to comfort.
Los Angeles Mayor Karen Bass says she will work with the City Attorney to create a mask ban for protestors. This is absurd and must be pushed back against!
Before I crash I need to thank
@SenSanders
for inviting me and letting me hold space as best as any one person can for the many (marginalized) communities they belong to. That is shared power.
They will rewrite history to make future generations believe this was inevitable. But I and my progeny will remember that our governments made policy choices to abandon historically marginalized communities to the pandemic.
Your risk of
#LongCOVID
rises with each additional infection.
A recent study has shown that by their third COVID infection, patients have a 40% chance of developing Long COVID symptoms.
Learn more about the threat of Long COVID:
Survived polio, spent his life disabled from it, died of COVID. Y’all won’t be satisfied until all people are disabled and disabled people are dead huh.
They say the GOP is a death cult.
Baby, white supremacy capitalism is the death cult.
So sad to hear that Paul Alexander passed yesterday at age 78 from Covid-19. Paul contracted polio in 1952, when he was just six years old. He ended up in an iron lung and while he could live outside it for extended periods of time he never really left it.
I am daily struck by the hold capitalism and the Protestant Work Ethic has on people even in nonprofit social justice work.
Like none of y’all wearing masks.
Y’all are really willing to disable yourselves
FOR YOUR JOB?!?!
THE SAME JOB THAT WOULD LAY YOU Off?!
I only improved my
#LongCovid
once I started pacing and resting, not when I kept pushing through the pain. This is the opposite of my toxic athlete’s mindset and hustle culture.
#StopRestPace
@ryanmhickman
@AngelaMSWinCA
You may continue to recover from PEM, but do take a look at the graph in the Pacing Guide for typical long-term responses to graded exercise.
Folks with LC tell me that they began to improve once they started pacing, not pushing.
Pacing Guide:
I don’t know who needs to hear this but there’s more to risk analysis for infections than death. I am heading into year three of being disabled (probably permanently) by
#LongCovid
3 yrs ago today, I woke up, went for a run, showered, and couldn’t warm up after.
LA and CA had issued shelter in place orders a few days prior.
That was the beginning of 3 years & counting of
#LongCovid
- thinking of all the first-wavers on our sickaversaries this month
🌊🦠🖤
We cannot ignore the public health crisis that is Long COVID. On Long COVID Awareness Day, let us commit to doing everything we can to address this horrible condition. The U.S. government must do more to increase awareness and provide additional resources to develop treatments.
As a member of
@CAPublicHealth
Office of Health Equity Advisory Committee - I would really like to know the equity rationale for this policy change, esp in light of the CDCs own data that show racial/ethnic and LGBTQ+ disparities in COVID-19 mortality &
#LongCovid
.
Californians infected with COVID-19 may go about their lives without isolating or testing negative as long as their symptoms are improving, according to new and significantly loosened guidelines from
@CAPublicHealth
.
📝 Kristen Hwang &
@carolynjones100
The
#VaxAndRelax
messaging from Dems was the kiss of death for public health and it's marginalized people who are paying the price.
Vaccines were framed as literally a one-shot deal, instead of part of a long-term strategy to protect the health and well-being of all ppl.
I have a lot of shame at how betrayed and hurt I am at the behavior of friends & colleagues in justice circles who have capitulated to the “old normal” while those like me grow more isolated and sick (from deferred care & socializing).
Risk is collective and additive, friends.
“But the Democratic Party are simply tired of accommodating themselves to a pandemic that is mostly killing other people; namely those who don’t have the luxury of choosing occupational exposure.”
Yikes. Truth hurts.
Every time I read about school closures in the media, the mental health and learning loss impacts on our kids, I NEVER read about how kids of color watched their families and entire neighborhoods drop dead around them for a year+. Somehow that never makes the story…
#pwME
- I hope you feel I held space for us, and all of our collective suffering and neglect, including and especially those who are undiagnosed and/or disconnected from healthcare.
It's wild ppl are mad about my
#HELPLongCOVID
testimony centering marginalized ppl & marginalized diseases like
#MECFS
.
My job was to make the Senators care about the federal programs & policies that they can move to help sick ppl RIGHT NOW. Others were there for the science.
In 2024, that burden of isolation hasn't changed
But the benefit has -- it just matters far less
98% of the population has at least some immunity
Incidence of Long Covid is way down
And we have widely available effective treatments for high risk folks
5/n
Your unmasked behavior - from eating in restaurants, to concerts, to even participating in this weekend’s Pride celebrations - is acceptably risky to you because those at greatest risk (like me) have no choice but to stay away. Your freedom is balanced on our isolation.
My hot take is:
#LongCovid
is a political identity not a disease in of itself
If covid triggered it, that's LC
You got COVID and then you got:
Chronic migraines? LC
Asthma? LC
Post exertion malaise? LC
Stroke? LC
MCAS? LC
POTS? LC
Heart attack?
Allergies? LC
The continued emphasis on deaths is a political and media strategy to mask the *ongoing* mass disability being wrought by this virus.
Invisibilizing disability is part of the strategy to further marginalize BIPOC & LGBTQ, who are most at risk of illness/disability.
New data from the U.S. Bureau of Labor:
The number of people with a disability dramatically increased & hit a new record of 34 million in June 2023.
#LongCovid
is a mass disabling event.
You guys "lockdown" was like 6 weeks almost four freaking years ago. No one has worn a mask since vaccines came on the scene. This is wildly inaccurate misinformation from the oppressive capitalist overlords.
With apologies to the beloved Joan Didion, we’re living in a decade of magical thinking.
Motivated reasoning is leading to a breakdown in our understanding of cause & effect. We decide on a cause, then map our present reality back to it. That’s science now. Endemic imagination.
Loved seeing Jessica Chastain in a mask last night at the
#Oscars
protecting her current production. As the lead, if she gets covid, things shut down for 8 days. #
1 year and 364 days ago I got back from a run and noticed I couldn’t smell my post-workout cinnamon oatmeal.
The rest is history. Newly disabled, high-risk, chronically ill.
This isn’t over for me, it’s not over for us.
#LongCovid
#NEISvoid
#MillionsMissing
#pwME
Angela Meriquez Vazquez was infected with COVID-19 2 years ago, but some of her most debilitating symptoms remain.
Migraines, fatigue, brain fog, heart palpitations, insomnia and sometimes a fever are among the symptoms that disrupt her day-to-day life
.
@POTUS
has supported science from day 1.
@ScienceDems
are hard at work building solutions to our greatest challenges with science at the forefront.
#SOTU2024
CDC: "High risk people should avoid crowds. Healthies should avoid high risk."
Everyone but disableds: I don't know anyone high-risk, I'm good! 😮💨
Our brains: WE ARE ALL THE HIGH RISK, WAKE UP!
As an education equity advocate here in CA, I understand this policy as being driven by our state's outdated school funding by attendance meaning sick students ➡️less money. & BIPOC communities getting more sick means their schools are being drained financially. 1/
In a turnaround from 2020’s strict stay-at-home COVID protocols, students can now go to class even if they test positive, Oakland school district officials said.
Y’all I’m really tired of being sick. Reinfection last month basically erased the last two years of managing
#LongCovid
- I was doing cardio & weights for most of the last year (while actively pacing, and hoovering medications & supplements)!
Now I am a sick potato.
Sincerely appreciate Angela being brave enough to share her history of trauma and depression in order to call out the gaslighting & bias that disabled & chronically ill people experience. Having a mental illness diagnosis doesn’t preclude you from developing physical illness /2
I don’t know who needs to hear this but
I literally paid almost $1500 of my own hard earned money to be there and took time off my day job to do it and more time off to recover.
I am a public servant. You’re welcome.
Doing more to learn about infection triggered sequelae than anyone
@UCLAHealth
in all of 2020. didn’t name him but the ER dept head Mark Morocco personally told me my extreme blood clots (I was blowing IV lines in the CT scanner) were a “false positive” bc of my pandemic anxiety
Senator Bill Cassidy (R-LA): "I've been up here reading PubMed...it seems like it's immune dysregulation."
#HELPLongCOVID
(for some levity got a bit of a chuckle here)
I don’t take for granted the risk I took by publicizing my brain fog. Folks are desperately hanging onto their jobs bc disability benefits for these invisible, poorly researched conditions are near impossible. I’ve had to re learn how to use this new brain & it’s a lot of work
2.5 years later, I still get bouts of
#LongCovid
brain fog so bad I can’t do simple household tasks like unloading my dishwasher. It���s like a steel door closes over my brain - I know it’s there, but there is no way to access. It. And the harder I try, the stronger the door gets
This is a standard-issue colonial oppression tactic. Inhumane conditions, infections, and no healthcare.
The fast-tracked rollback of the few remaining COVID precautions here in the US is simply an extension of a colonialist, white-supremacist strategy for power hoarding.
Almost everyone in my shelter is sick. We’ve been severely coughing & facing breathing difficulties, unable to go to a doctor as hospitals are already overwhelmed with victims.
Today a doctor in the house just told me it’s COVID, spreading rapidly in overcrowded areas.
#Gaza
I am having a really hard day and feeling the pain and loss and social isolation of
#LongCovid
and all its trauma today. I give my best every day to be a leader in this space but I am not feeling near my best lately at all.
My spouse tested + this AM. I am feeling feverish.
It was not easy but we both got Paxlovid.
I am feeling quite angry and thankfully the rage is displacing the fear and PTSD of the last time I met this virus.
Reminding myself back then I got no real medical care for months.
Thank you to the panelists and every person who tuned in to the long COVID hearing this week. This serious issue has not received the attention that it deserves from the medical community, from the media, and certainly not from Congress. It is past time that changes.
Had to abandon the
#PodSaveJon
conversation because
my spouse just tested positive for COVID
We def got it at my parents' house on Xmas.
Reminders from the :
1. 1-way masking is insufficient for all of us
2. SWAB YOUR THROAT
I’m noticing quite a gendered response to the
#LongCovid
hearing yesterday and I can’t say I’m surprised.
I’ll keep doing my thing but our community & media have a lot of work to do to embrace multiply marginalized and poor people.
As predicted my
#LongCovid
reinfection came from my spouse who got it at work where he masks religiously but most others don’t. No accommodations from his HR to help him protect me even as my caretaker. The man ate lunch alone in the parking lot bc outdoor lunch areas are crowded
Most working-age people who died in 2020 were low-paid essential workers, and many workers carried the virus into multigenerational households w/high-risk elders. Yet, workplace protections remain conspicuously absent from “next pandemic” conversations. 2/
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.
The amount of social capital I have lost bc of my disability & risk profile in the last 4 years is devastating.
I’m abled enough now to show up to these spaces, masked and snarky.
Disabled people EXIST
I will not be made invisible!
I'm not married and usually live alone, but I will admit that, except in the summers or warm weather, it has been awful to be locked out of 95% of professional and personal social life because indoor dining is almost the only way people gather
This is a 4 hour Benadryl infusion for my
#LongCovid
mast cell activation syndrome or
#MCAS
. The hydration helps my POTS and the Benadryl calms my overactivated innate immune system - ironically it reduces my fatigue, and also helps nerve pain and brain fog.
Thank you
@SenSanders
for leading on
#LongCovid
.
In January, you invited me, another person w LC, and a parent of a youth w LC to
#HelpLongCovid
.
We shared how little has been invested in infection associated chronic conditions & how that policy choice has cost us all dearly.
BREAKING: Senator Bernie Sanders drafts proposal for Long Covid Moonshot.
The proposal earmarks $10B in Long Covid research funding over the next decade.
Every time disabled people come close to “normal” during this pandemic, we eliminate the very precautions that facilitate that access. How come disabled people don’t get to be free in the pandemic? How restrictive are masks, and for whom?
I would love to be able to go to a show, masked, with other masked people, if I thought the only places they were unmasked were at the dentist. But I know that’s not the case, and vaccinations are clearly not enough to eliminate transmission the way masks still can.
So my spouse’s PCR was negative but he now has two positive rapid tests. The difference? The home tests were throat swabs - his first symptom was a sore throat 👀 God how many infections are we missing
My spouse tested + this AM. I am feeling feverish.
It was not easy but we both got Paxlovid.
I am feeling quite angry and thankfully the rage is displacing the fear and PTSD of the last time I met this virus.
Reminding myself back then I got no real medical care for months.
Big thank you to
@SenSanders
team who were generous with their time, prep, and were masked the entire time I was there. We Stan the
#CovidCautious
cuties who staff our public officials!
#HelpLongCovid
Folks with disabilities can't receive quality healthcare when medical facilities lack accessible equipment like examination tables & weight scales.
I'm urging
@TheJusticeDept
to address this injustice and help the disability community access the quality care they need & deserve.
Hi your new/worsened: migraines, allergies, shortness of breath while exercising, heavier menstrual periods, persistent cough/tickle in your throat, high blood pressure, high cholesterol, insomnia are ahem
#LongCovid
Hi. Yep. That’s me. You’re probably wondering how I got here.
Well it all started in March 2020 when I went to Target during the first surge of community spread of COVID-19. The CDC said masks were unnecessary.
#LongCovid
#BrainFog
I'm going to need non-Black
#LongCovid
patients to mind their business about Black
#LongCovid
and
#CovidCautious
people.
Collect yourselves.
Oppressive racist ableist systems are the problem, not our multiply-marginalized comrades.
🤔 citing Act Up to me like AIDS also isn’t a socially-constructed disease.
Long COVID is a disease but like all diseases it is socially constructed w science deployed ex post facto. Marginalized ppl have a vested interest in constructing that definition - a political activity
Oh man pity the poor canvasser who comes to my Brown disabled door (in a white neighborhood hehe) without a mask. Imma ask to speak to the candidate in my asking for the manager voice
If COVID worsened a pre-existing disease, THAT'S LONG COVID.
The reality is we need to figure out WHY *infections* are associated w certain clusters of disease symptoms we continue to see but have no treatments for. These incl the "septad" diseases - MECFS, POTS, MCAS & others
One of the main reasons
@itsbodypolitic
closed was bc we couldn't sustain the quality & intensity of moderation on volunteer sick/disabled labor (including mgmt/leadership) w/o serious funding.
@desertdracula
@LauraMiers
“Ask anyone who has dealt with persistent harassment online, especially women: this is not usually what happens. Instead, the harasser keeps pushing and pushing to get the reaction they want with even more tenacity and intensity.”
In the
@itsbodypolitic
support group, it was alarming how we watched many of us slide quickly into poverty and homelessness after getting
#LongCovid
- & these were the ones w enough pre-sick resources to be in an online support group.
By the way, a lot of you are rightfully alarmed about homelessness being made illegal, but far less of you are connecting anti-masking to it.
COVID > long covid > can’t work> can’t pay bills > lose housing > forced homelessness > arrest > imprisonment.
And that’s for 8-10% of
If I have to hear one more unmasked abled person in public health privilege in-person over virtual engagement I am going to lose my cool.
Disabled and high risk people EXIST. Homebound ppl exist. Neurodivergent ppl exist.
Our virtual relationships are RICH and VALID and HEALING
A new report from the U.S. Surgeon General’s office finds that loneliness can have profound effects on mental and physical health.
To better understand that report,
@IAmAmnaNawaz
spoke with
@Surgeon_General
.
But the solution here is for CA to change its funding to a more equity-centered enrollment calculation, not expose children, families, esp high-risk ones, esp ones w less access to healthcare, to show up and contribute to community spread.
Today I responded to a clinical research survey about my chronic migraines and responded “yes” to the Q about whether my migraines were the result of a traumatic brain injury. Felt badly I might skew their data but don’t know how else to describe what
#LongCovid
did to my brain.
I don't know what we're supposed to do with these people that are like "I haven't been in a restaurant in almost four years because of COVID". That is just nuts and such an unhealthy way to live.
I am not quoted in this article but an old photo for a CalMatters piece I did last year is the header.
You're looking at the new
#LongCovid
stock photo I guess
Ugh this needs saying:
“disability justice” isn’t just grounding yourself in the history of post-viral illness. Even an understanding of disability poverty is insufficient. Unless you’re centering the *unique* experiences of Black/Indigenous disabled ppl, it ain’t it, my fam
I spent $678.56 on *sodium supplementation alone* for POTS in 2022. My income during that time was low enough that my household qualified for SNAP.
An example of
#disabilitytax
-- I have never heard of a POTS patient getting sodium supplementation covered by insurance.
This is still not the take, my guy, and you know it.
Your ableism is showing. I encourage you to do a whole Pod on
#LongCovid
since you’re so committed to preventing it.
Feature activists who are disabled by Long COVID 🙋🏽♀️
And I STG if you interview even 1 psychiatrist…
Just to follow up: the brand of person I was referring to is someone who tells people to fuck off if they choose to work from home while sick. I don’t find that persuasive, I find it unhinged.
Long Covid is real, tragic, and deserves more attention (I had a post-Covid condition
“Why were patients with commercial insurance twice as likely to develop Long COVID than patients insured through Medicaid?” - Because we’re not arming our public health safety net w the tools needed to detect and treat
#LongCovid
"We also see that..the removal of the mask mandate, the social distancing requirements that have been removed. People are going to get out there. We know with all of that, infections are going to increase, and that's the role that Paxlovid can play."
- Pfizer rep Angela Hwang
I could not drive for the first six months of
#LongCovid
- I was dizzy, disoriented, no short term memory, executive functioning was gone. It was akin to being drunk.
Please cancel your plans this year. I had a mild initial infection.
I want to say this as gently as possible; if you have cognitive
#LongCovid
, please consider not driving for at least 6 months.
Same with all high-risk tasks (i.e. try to get help to watch children). I won't share the horror stories I've heard but wish I didn't know them. 😭
Over HALF of farmworkers w/ COVID histories in this study had symptoms of
#LongCOVID
including fatigue.
Perhaps bc this is a profession defined by overexertion and 0 rest?!
@CAPublicHealth
@DHCS_CA
WHAT are we doing about this?!
Science is always political. What we study, why we study it, how we study it, who is allowed to study it, who is allowed to benefit from the science, who can communicate it.
Democratizing science is a social justice issue.
@AngelaMSWinCA
It's fascinating how so many people don't understand the social and political forces shaping how very real pathophysiology is treated. I don't see how acknowledging those invalidates our suffering, and it might even help us brainstorm more effective ways to get what we need.