emily fraser 🌿🐌✨
@emilyesfraser
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Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
The Wayside
Joined November 2018
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If you’re struggling to get by w/
#MECFS
or
#LongCovid
in the US, this site is a life buoy & a treasure chest: . I haven’t even begun to explore all of it, but The Sleepy Girl Guide to Social Security Disability helped me get SSDI on my first try.
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5 days ago a woman I know posted, “Covid is in our house.” Today she posted, “Yesterday at the dentist…” And this is why we can’t have nice things— I mean, basic medical care.
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I was talking to my husband about my “comms strategy” on the way to an appointment with a new doctor the other day & he suggested describing a symptom as brand new instead of 8 years old bc he’s started to realize what every person w/ a chronic illness inherently knows:
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Hmm, doc just said she suspects my latest weird/terrible infection may have been Covid despite 3 neg PCRs. She said she’s been having patients test neg on PCR but have sky high antibodies after Covid-like illness. If this is a trend w/ the latest variants, that’s… not great?
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The longer you’ve suffered & the more things you’re suffering from, the less doctors give a damn.
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My Grandma has Covid for the 2nd time. She was found “unresponsive” by nursing home staff & brought to the hospital, where it sounds like they did all of nothing for her, called it “unspecified fainting,” & sent her back. They ran a RAT at the nursing home that was positive.
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Turning off comments because the robot trolls are creeping in. To everyone struggling to stay safe through the 3rd year of this pandemic, I see you. Everyone who has lost their health, a loved one, or their faith in the world, I see you.
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“Death and suffering have been normalized to such a horrific extent that the vulnerable are now expected to remain "civil" when asking not to be disposed of so that others can keep social plans intact. The moral vacuum of the current moment is shocking.”
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Soooo does measles transmit asymptomatically?And what’s the incubation period? Questions I never thought I’d need to ask 🫠
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Just found out another friend has Long Covid and a college classmate is in the ICU with Covid. Both beautiful, brilliant women in their 30s. I’m so sick of watching people be destroyed by this virus. So sick of watching people destroy other people with their selfishness.
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Hearing that the staff at infusion centers are refusing to mask for cancer patients has made it abundantly clear to me that cancer treatments are not about curing cancer & saving lives, that healthcare is not about caring for people’s health. The only goal is making money.
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If I ever have a heart attack I guess I’ll just die because I have these symptoms all the time & have trained myself to ignore them 💁🏻♀️
For the past 35 years I've seen an ⏫️ in cardiac events after major holidays, especially in the cold months. Today's no different. Don't ignore these symptoms. If you go to an ED/urgent care please wear a well fitting respirator. Waiting rooms are like plague wards right now.
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Still masking because being sick suckszzzz. I don’t want to get any sicker & I don’t want to accidentally hurt someone else. Pretty simple 💁🏻♀️
I wear a mask in public because Covid is NOT mild, it’s a dangerous level 3 pathogen, and we are still in an active pandemic. I want masking in public spaces, especially hospitals, so if you agree, show me your mask in comments, copy this and let’s see who’s out there.
#MaskUpC19
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“A plague of the young:
The largest group of people afflicted is younger than you think: Those aged 25-39 have the highest rates of long COVID, closely followed by adults aged 40-54, according to the CDC.”
We ignored AIDS. Let’s not repeat the mistake on long COVID | Editorial
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When I complained to my doctor of a chronic sore throat, pounding heart, feeling shaky & dizzy, & fainting in the shower, she told me it was “panic attacks from repressed childhood trauma.” I can’t describe how furious I am that this is still how women are being treated.
If you're wondering what kind of 'treatment' you'll get if you develop
#LongCovid
you should know the local LC service just asked me if I had suffered trauma earlier in life, offered me an exercise class, and told me a story about someone who 'just slept too much'.
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Fixed it.
President Trump still has no plan to address COVID-19.
He quit on you, on your family, on America. He just wants us to grow numb to the horrors of the death toll and the pain.
We cannot afford another four years of his failed leadership.
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When people say they can’t think well enough to do their jobs anymore, can’t keep up with normal conversations, can’t safely drive, they’re not lying!
‼️People w/
#LongCovid
(LC) have marked cognitive slowing. On a reaction time test, ppl w/ LC responded to stimuli ∼3 standard deviations slower than controls. This is very striking. Major implications for education, public safety, & economy.
#MedTwitter
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The mask is for all of us, but the red lips underneath are just for me 💋
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I don’t think anyone outside of Covid conscious land is contending w/ how much ground we gave up over the past 4 years. We threw the entire idea of collective action & government responsibility in the dumpster & gleefully lit it on fire. Climate change will not go easy on us.
In the end, we haven’t just lost health and lives. Our ethics and morals have been degraded. We are worse people. And as a worse, less caring society, we are much less secure as potentially vulnerable individuals in the face of future threats requiring collective action.
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My grandma died this morning. She started rapidly declining after Covid ripped through her nursing home this fall. Her death won’t be recorded as a Covid death, but it is. I’m sad I wasn’t able to say goodbye. I miss her & I miss the missed time that Covid/ME took from me.
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I can pretty much guarantee a lot of people with Long Covid think they’re still healthy but just weirdly out of shape all of a sudden & they “probably need to exercise more & eat healthier?” I’ve been hearing this kinda thing all the time on social media recently & I just 😣
Anyway, this is why I keep saying the number of acknowledged Long COVID cases is going to be a lagging indicator. It's going to lag by several years.
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My bff’s mom is in the ICU w/ Covid complications. My Grandma has stopped eating after her 3rd? 4th? 5th? infection & I’m preparing myself to never see her again. I’m trapped in bed 3.5 years after being infected, my world in tatters. Yet most people in my life dgaf about Covid.
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I made some artwork for everyone who doesn't feel the need to mask or provide COVID safety protocols at rallies, at pride events, in spaces where disabled folks belong.
When the ask is this small, your outright refusal to create safety speaks volumes.
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Hi, I'm Emily! I used to be a documentary filmmaker, teacher, environmental activist, artist, adventurer, wife, friend. Now I spend 22 hours a day in bed, too sick to interact w/ the world, too sick to watch films, much less make them.
#MillionsMissing
#MECFS
#LongCovid
1/
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1 in 15 US adults have Long Covid—& that’s not including everyone starting to wonder why they’re still struggling after their Jan/Feb infections, everyone wondering why they’re still struggling after “that weird flu” a year ago, or everyone w/ asymptomatic acute infections
The rate of people experiencing
#LongCovid
has jumped to 6.8% of all US adults, up from 5.3% just four months ago.
That's 1 in 15 adults, and is the highest it's been since 2022.
We can reasonably expect a future increase from January's wave.
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I’m too tired to be furious right now but if this pushes my ME from moderate/severe to very severe I will never forgive the world. Ever ever ever.
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“Covid is but a prelude for how states will handle the era of catastrophic climate change. It is a test run of what happens when powerful elites deem the public disposable without even feigning a pretense of concern. It is a dark omen of our lost leverage.”
~Sarah Kendzior
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I think the government is really underestimating how radicalizing it is to become disabled.
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The incompetence & neglect is making my blood boil. She had “asymptomatic” Covid just after being vaxxed in 2021 & I wouldn’t be surprised if she got it again during the Jan Omicron surge but they just didn’t bother to test anyone. Her dementia has gotten much worse this year.
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@meghanor
But we’re not even serving the able and young. We’re disabling them at record rates. If you end up with ME/CFS from Covid as a teenager or young adult, you’re likely looking at 50+ years of dashed dreams and misery ahead of you.
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Pro-tip for everyone “living their lives,” if you end up severely disabled by Long Covid you probably won’t qualify for long term care insurance. I called around & couldn’t find anyone to cover me. Maybe invest in it now because you might really need it?
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My family has been very "laissez-faire" about Covid (especially after vaccination) & it's taken a big emotional toll on me. I'm the only one advocating for masking, testing, ventilation/filtration, antivirals, trying not to infect others, following up on lingering symptoms.
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Yet another way the pandemic is a feminist issue. Not only is Covid more likely to disable women, but women are more likely to become caregivers to loved ones who are disabled. And when the caregivers become disabled, who cares for them? The math doesn’t math
"Other countries have social safety net. The U.S. has women."
That quote is the beating heart of my new book, HOLDING IT TOGETHER, which will be out June 4, 2024 with Portfolio/Penguin, and which I can't wait to share with all of you.
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Welp, partner was on a film shoot Thurs-Sun w/ someone who tested + this morning. He was the only one consistently masked & they ate outside. He’s moving to an Airbnb today to try to keep me safe. Fucking hate that my life is nothing but sickness & trying to dodge more sickness.
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I know unsolicited medical advice is never welcome, but I feel an absolute compulsion to mention
#LongCovid
& post exertional malaise to everyone I see posting about how they “just don’t feel like themselves/are weirdly irritable/can’t focus/can’t sleep/energy levels tanked.”
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Chronic illness can be like this. You suck it up & swallow it down every day without thinking too much about it, but every once in awhile you realize it’s kinda a lot.
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First ever New Year’s Eve alone so I decided to get dressed up and take myself on a hot date to the living room. Thai food + Lucille Clifton + the strength to actually get dressed and put on eye makeup = honestly a pretty spectacular evening 💜✨
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Been a little while since I’ve taunted the trolls, & this light is just so pretty 💛✨
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This is why vulnerable people can’t “just isolate.” I hardly leave the house & I still got wicked sick. Not to mention all the vulnerable people who still have to work, go to school, go to the doctor, buy groceries, etc.
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As far as I can tell, they mostly ignore my advice. I feel most sad & guilty about my young nieces & nephews & my grandma bc they can't protect themselves.
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I don't know anyone with post-exertional malaise (
#PEM
) who doesn't push themselves to their limit & beyond on a regular basis. The idea that people w/
#MECFS
#LongCovid
have false illness beliefs & a fear of exertion is absurd.
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So sick of this behavior. If you feel this crummy why do you think it’s ok to bring people to a crowded room to spew your illness at them for two hours? 1 in 10 Covid infections leads to people feeling this way FOR THE REST OF THEIR LIVES. Y’all need to stop spreading this shit.
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I think there’s a common misperception among abled people that healthy vs sick is a binary & once you’re chronically ill you’ve already “fallen by the wayside” so why do you still care so much about protecting yourself? They have no idea how many levels of hell there really are.
It's hard for people to imagine just how much more severe you can get, going from 100%-25% function feels like the end of the world, but going from 25% - 5% is basically an order of magnitude worse, utterly devestating, but try going from 5% - 1% or less, pray you never know...
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Glad to learn she's on Paxlovid. And it sounds like the hospital ran a chest X-ray which was clear. (I assume they suspected pneumonia? But then didn't bother to run a Covid test??) I'm getting all of this information second hand from my dad.
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Oh look, another example of someone with a giant platform encouraging animosity toward chronically ill people *during a mass disabling pandemic* 🫠
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I’m a filmmaker who can’t watch films. Imagine being so sick that not only can you not work or socialize or take care of your family or yourself, but you can’t even do the things you would normally do to comfort & entertain yourself while you’re stuck in bed. Forever.
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I’m a huge fan of this
@BerlinBuyers
grassroots public education campaign! Get your stickers here & join in ⬇️
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I don’t dress for women
I don't dress for men
Lately I've been dressing for my phlebotomist (because she's nice and always compliments me and she's pretty much the only person who sees me dressed and out of the apartment anymore so I gotta make it count)
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This was posted on March 14th, 2020. Read the whole thread.
If you still think
#LongCovid
is mysterious, or unprecedented, or rare, you haven’t been paying attention. If you think rates of 10%, 20%, or 30% feel impossibly high, you haven’t been paying attention.
Please stop telling young people they should avoid
#COVID
ー19 infection to protect the old. Tell them to protect themselves.
Long-term symptoms 6+ mo post-infection:
EBV: 11%
Q fever: 11%
Ross River Virus: 11%
West Nile Virus: 31%
SARS: 87%
Ebola: 90%
COVID-19: We have no idea
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@wonder_cripple
Every kind of accessibility that doesn’t take energy-limiting illness into account. E.g. companies that don’t offer part time positions. Conferences that last all day. Government services that require mountains of paperwork. Doctor offices that don’t offer telehealth.
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Narratives around people faking illness to get money or attention are part of a coordinated strategy to discredit the huge numbers of people being disabled by Covid because their existence is a threat to the status quo. Don’t fall for these narratives.
We’re going to see more and more ableism towards chronically ill people in this stage of the pandemic and onwards. It’s going to get worse as chronic illness becomes more of a scapegoat for everything. If you see this, you call it out. Squash any narrative like this
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So much evil here. Why did he catch 3 viruses in 3 months? Why was the healthcare system unable to care for his basic needs but perfectly equipped to kill him? Why was he made to feel like a burden? These are all policy issues reflective of values… the value of $$$ over life.
I hate everyone who failed this man. I hate the people making excuses. I hate every single policy maker in the history of this country that caused this. I hate that ableism teaches *us* that we're the burden not the godawful system that leads to this.
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The thin line between treating POTS and binging on potato chips.
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If so (I’ll get an antibody test soon), that’s now 3 suspected infections since 2020 without a positive test for any of them. Honestly beyond frustrated bc I’ve been trying to be extremely careful & I can’t afford any infections, much less Covid. My white blood cells are tanked.
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Trying to figure out if they’re giving her Paxlovid.
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I made my account private to stop the likes because 88K eyes on me is 88K too many, but apparently I wasn’t the only one feeling frustrated. Ironically, most of those people would probably be totally cool with this today. Propaganda is a powerful drug.
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I wrote to the White House about Long Covid & in classic Biden admin gaslighting fashion they sent a form response that refuses to acknowledge LC, instead stating “We’re now fighting COVID-19 from a position of strength, & it no longer needs to control our lives.”
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My birthday is next weekend & I’m raising money for
@OpenMedF
’s research into multisystem chronic, complex diseases such as
#MECFS
,
#LongCovid
,
#ChronicLyme
, &
#Fibromyalgia
. Please donate if you’re able 🙏🏻💙
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Guess the year ⬇️
2023? 1985? 1955? 1934? 1868?
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Been seeing a lot of “I’m at my breaking point” posts recently… and this is mine. I’m not okay. I’ll be okay—don’t worry—but sometimes this world is just too much 💔
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@gregggonsalves
@CDCgov
The third fatal flaw is ZERO MENTION OF LONG COVID. We are in the midst of the largest mass disabling event in human history and the
@CDCgov
is refusing to acknowledge it or do a damn thing to stop it.
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Never tell a disabled person they’re not trying hard enough. You likely have NO IDEA what they’re up against & how hard they’re fighting just to survive. You likely don’t want to know either bc reality scares you & you’d rather blame them than imagine you could be them.
Another day - another person telling me I need to “try harder” to find a care home where I will have ‘round the clock care’ & not be a burden to friends & families. People refuse to accept that for MANY chronically ill & disabled people there are no suitable options. A 🧵 /1
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When I said, “they want us numb to horror because they know more horror is coming. They have no plans to stop it,” I wasn’t just talking about Covid 🙃 I was talking about the violence of eco collapse, fascism, punishing people for being born poor/vulnerable/in the wrong place.
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I’ve gotten very scary health news from multiple loved ones this week—all things that may be related to/exacerbated by Covid. My reaction is sadness, helplessness, fear, but not shock. I’ve been bracing for this kind of news for 3 years. The unthinkable is just the everyday now.
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I had considered making a documentary film about
#MECFS
#LongCovid
early on but I didn’t have the physical, emotional, or cognitive capacity. What I’m realizing I might have capacity for is to just record day to day moments of my chronically ill body in its housebound existence.
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Sick & disabled people have effectively been rounded up & cast out of society & if this doesn’t upset you, I wonder why not. The line between healthy/abled/“normal” & sick/disabled/“abnormal” has always been tenuous but never more so than now.
My latest- the Biden administration’s
#COVID19
policies segregate sick and disabled people using the cruel ideology of the medical model, for-profit healthcare, and
#Eugenics
#CovidIsNotOver
#HighRiskCovid19
#WearAMask
#Disability
#Immunocompromised
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Infectious dose also matters. My body has a better chance of handling a smaller dose of Covid that slips through a mask in a ventilated space than raw dogging it in a hotboxed room full of sick people
There're many people who go 'COVID is inevitable' so there's no point. There are differences in the average no. of times people who consistently wear well-fitting respirators & prioritise ventilation/filtration get it - vs those who don't. Mitigation works if you do it properly.
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We are experiencing the single greatest mass disabling event in the history of humanity, *during* the
#SixthMassExtinction
of the only planet in the entire universe known to support life. And of 7.9 billion non-stop talking people, *almost none* are talking about this.
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Hi, I’m Emily & I live in California. I refuse to accept that infections & re-infections of a deadly & disabling virus are inevitable. I know how life shattering infection-onset chronic illness can be so I wear an N95 to protect myself & my community.
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Just saw yet another person complaining on social media about getting sick & feeling depressed & nauseous for months, losing 20 lbs, not being able to function… but it’s okay bc they’re drinking protein shakes & working out to get healthy again. I feel like The Sixth Sense kid.
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Overwhelming biomedical evidence vs. half a dozen discredited psychologists, but let's pretend to "both sides" the largest mass disabling event in human history while actually writing a bog standard middle school persuasive essay arguing for the wrong side 🫠
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Thanks to everyone who advocated against this change that would have erased a lot of disabled people from official records—including many newly disabled by Covid. All of these calls to action can feel exhausting & unrelenting but they do make a difference! 🙌🏻💙
Advocacy win! The Census Bureau just announced that they will not change the disability questions in the 2025 American Community Survey (ACS).
Thanks to Bonnielin Swenor, PhD, MPH; Jean P. Hall, PhD: Scott D. Landes, PhD for passing along this good news.
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Coming this week, viewable to westbound traffic entering the Bay Bridge from Oakland. Someone grab a photo if you see it!
This took me literally 5 minutes to type into the Blip website & will cost me $23 per day:
Until now, 18 billboards (or more) have been set up worldwide
(UK, Canada, USA).
(In about 10 days, there will be 5 more billboards in the UK)
The more billboards around the world, the greater the chance of finding a cure.
Together towards a cure!
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Whether it was Covid or a different virus, my guess is my partner was probably exposed to a very low viral load & then I got a “full dose” from being around him. He avoids indoor settings as much as possible & wears an N95 when he can’t. He had zero symptoms while I was slammed.
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@zeynep
The message can’t be “those poor people w/ Long Covid deserve help.” It needs to be “we are all at risk & we need to start acting like it.”
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Excellent piece tracing the manufacturing of consent for never-ending COVID reinfections—“a fantastic coup for the right.” It’s honestly astonishing how much—& how easily—the far right has achieved since 2021, under Biden.
I just wrote about how the most critical component of breaking solidarity re:COVID was the construction of an otherized “vulnerable group” that encompasses somehow everyone and no one
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First thoughts when you hear someone had a heart attack/has cancer/is bedbound/died of Covid? Is it how old are they? Pre-existing conditions? Are they overweight? Inactive? Unvaccinated? Unstable?
How quickly do you reach for something that makes them *different* than you?
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@2dreamornot2
💯 SO much traumatic loss with no societal support. And so much of trauma work focuses on creating distance & feeling safe in your body in the present… which is hard when the trauma hasn’t stopped & your body isn’t actually safe. “Treating” it can just turn into more gaslighting
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Thinking about the ppl I know who are still Covid-cautious. Many are disabled/immune compromised/deeply aware of the physical vulnerability of bodies, but I think we’ve also come to terms with the fact that the system doesn’t serve the ppl, that power doesn’t care about us.
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Partner is back in town from visiting family & is now isolating for a week to keep me safe. We had a distanced dinner on the roof of our building last night & I remembered how much more extroverted he is than me (& how much harder this never ending pandemic isolation is on him).
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@LakeviewET
I guess you’ve never heard of infection associated chronic illness or gaf about immune compromised people or the MILLIONS of people who will die if everyone on earth catches a virus that doesn’t actually need to be circulating 🙄
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Two years ago yesterday my husband flew home from Kenya via Amsterdam. Trump had just announced a ban on flights from Europe to start that night at midnight, so we were relieved he was able to get home. He called me from his Uber to warn me that he had a slight cough… 1/
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But most of all, I grieve for the sheer number of people suffering similar fates, and worse. Along with unimaginable numbers of deaths, we are experiencing a
#MassDisablingEvent
and rather than try to stop it, our leaders have gaslit and abandoned us. It is unconscionable. 9/
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Every time I go to a medical appointment someone asks if I had a good weekend or if I have any plans for the weekend. *Every time* I’m shocked to remember a) there are different days of the week & b) weekends are a time when people often do nice things 🙃
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1986. Yet nearly 40 years later people are still having their lives decimated by doctors telling them to exercise.
1986: "Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms." Maybe someone should tell
@guardian
. 🧐
#MECFS
#LongCovid
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“As someone who’s already experienced societal breakdown, here’s the truth: America has already collapsed. What you’re feeling is exactly how it feels. It’s Saturday and you’re thinking about food while the world is on fire.”
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Pro tip: if you don’t want to be called an ableist eugenicist don’t use your platform to defend ableist & eugenicist policies & the propaganda propping them up during a mass death & disablement event… by using ableist insults to try to discredit critique from disabled people 🙃
@bendreyfuss
I made the mistake of commenting on the absurdity of this particular outrage and have been called an ableist eugenics advocate by a lovely crew of folks who seem pretty excited that they briefly got
#PodSaveJon
trending.
This place is the best.
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As Americans pay $10 for RATs that don’t work 🫠
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“The cold truth of the matter is that the motive behind COVID minimization is greed and social control... in the context of long-term precautionary measures, the population would get used to a dangerous notion — that we have value beyond our labor and our consumption.“
The pandemic is not over. It's much worse than you've been led to believe. And unless you've spent the past several years reading scientific studies on the subject, it can be hard to convey just how wrong the public perception of COVID really is.
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💯 It’s not just about allyship between
#LongCovid
&
#MECFS
. If you got Covid & now meet the clinical definition of ME/CFS, you *have* ME/CFS, just the same as if got Covid & now meet the clinical definition of POTS, you *have* POTS. 1/
@inducekarmaaa
@Laura52872w
@ClausErnst
#MECFS
is a clinical diagnosis characterised by
#PESE
. There are multiple triggers. The COVID19 virus is one of them.
#LongCovid
includes the above group, plus others without
#PESE
. Examples include recurrent pericarditis, progressive neurological abnormalities.
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ME/CFS patients did not fight like hell for years to have harmful & ineffective GET/CBT removed as “treatments” only for *this* to happen to Long Covid comrades 🤬
So I met with a specialist today at the long Covid clinic and guess what they prescribed me after telling them I'm deteriorating so much I am 98% bedbound where I could walk and drive 7 months ago .... GRADED EXERCISE THERAPY AND CBT. I can't deal with this
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It’s okay to lose hope. You can still do good things in the absence of hope. You just do them because they’re good things to do.
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Do you ever think about the animals who may have ME/CFS & Long Covid?
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Adding to note: on second thought, I’ve been hearing anecdotes about false neg PCRs since this winter, so I’m guessing this isn’t a new issue w/ the latest variants. Though maybe related to where the Omicron lineage likes to hang out (nose vs throat)? Less thorough swabbing? 🤷🏻♀️
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This is why so many people w/ complex chronic illnesses eventually resort to researching/diagnosing/trialing treatments themselves. It’s not bc they’re anxious hypochondriacs or they enjoy telling doctors how to do their jobs—it’s bc they realize no one is coming to help them.
I have been right here.
And there are literally millions of people right here right now being failed by the non-integrated approach of most of modern medicine.
This is brilliant 👇🔥
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When the mean girls from high school start showing up in your chronic illness support groups 🫣
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Four years today. It’s been hell but I’m proud of myself for doing my best. Disability justice & the beautiful people I’ve met through my phone continue to save my life. Thanks, y’all 💙🩵
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I don’t watch reality tv but I’m absolutely seeing this with social influencer types. It’s everywhere I look but no one is calling it what it (most likely) is 🫠
Long COVID and random health issues are starting to show up in a lot of the reality tv I watch 😵💫
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