Thread by @MamaToronto

“Long COVID Has Never Been Taken Seriously. Here’s Where It Left Us

I’m 28 and one of many disabled from the pandemic. We need a public health plan for this.”

H/T @TheTyee

🧵

https://twitter.com/TheTyee/status/1618806248819900416?s=20&t=POn9jiLKAbPQW8VAPEsOeA

“Before the pandemic, I was a law student who spent my weekdays studying for long hours and my weekends hiking or cycling. When I developed COVID-19 symptoms in late March 2020, my case was mild….”

“But then I never got better. The sore throat never went away, and the shortness of breath and fatigue would get better only to get worse again.”

“I spent the first year of the pandemic getting sicker and sicker, until I became mostly housebound, unable to walk around the block, and unable to sit up or think straight for long enough to hold down a job or continue my coursework.”

“Desperate for help, I was passed from dr to dr. I saw an ENT specialist, multiple internists, a rheumatologist, a dermatologist & a neurologist, often waiting months b/n appts. Each ruled out familiar illnesses w/in their specialty, then quickly passed me along to someone else”

“1 X 1, I said goodbye to the pieces of my old life — coursework, exercise, time w/ friends, my ability to live independently — until all that was left was spending almost all day & night horizontal, occasionally sitting up for food or drink, or standing to walk to the bathroom”

“It’s hard to appreciate how much energy breathing takes until you’ve experienced the bone-deep fatigue that makes you acutely aware of the effort to expand your ribcage for each breath.”

“For months, I was told I wasn’t eligible for one of B.C.’s #LongCovid clinics b/c I hadn’t been eligible to get COVID tested when I was sick in late March 2020. PCR testing then was unavailable to the general public, so I had just isolated at home as directed by public health.”

“Eventually, an autoimmune specialist, impressed with my persistent “COVID toes,” sent the referral through. At my first appointment with the now-closed-down Post Covid Clinic at St. Paul’s, almost two years after I got sick, my dr confirmed what I already knew —

… that I “tick all the boxes” for both #LongCovid & myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a complex chronic illness affecting nearly half of patients with prolonged post-COVID symptoms”

“But as the chronic illness community knows too well, a diagnosis does not necessarily lead to effective treatment”

“It may be possible to treat some aspects of #LongCovid. I’ve been prescribed an inhaler for my shortness of breath, and pills for my orthostatic intolerance, so I can now stand for several consecutive minutes without risking fainting….

…But as a recent summary of the #LongCovid medical literature in Nature put it, “there are currently no broadly effective treatments for long COVID.”

“We are living through a mass disabling event. Statistics Canada estimates that there are 1.4 million COVID-19 longhaulers in Canada. As the virus continues to circulate, our ranks keep growing.”

“The World Health Organization estimates that 10 to 20 per cent of COVID-19 infections result in #LongCovid “

“Amidst all the loss I’ve experienced, there’s been the cognitive dissonance of watching most of the rest of the world try to return to normal, without me in it….

… And seemingly unaware of the reality that #C19 is still out there, resulting in long-term chronic illness for a significant share of people infected”

“Before COVID, I could have written this essay in a couple days. Now, I write in 20 to 30 minute shifts spread out over many weeks.”

“I would rather save my precious energy for activities that aid my recovery, or my resilience in the face of relentless illness. But I couldn’t stay silent anymore. Because the lack of public awareness or a government plan for #LongCovid is dangerous.”

“Part of the insidious nature of this illness is how easily it is rendered invisible. Those who are sickest are housebound or even bedbound. Our communities don’t see what we’re going through.”

“Even for longhaulers who aren’t housebound, their illness often is not visible. They may not share details with colleagues or friends due to fear of stigma.”

“Many can still work full time, but must follow complex medication regimens and careful pacing and rest. They may no longer be able to exercise beyond a gentle walk.”

“In addition to so many of us being physically absent from our communities, or present with invisible conditions, there is the reverberating silence of our provincial government on #LongCovid “

“There can be no “return to normal” as long as COVID-19 continues to trigger chronic illness and disability en masse. The push to return to normal amounts to a denial or wilful ignorance of #LongCovid “

“It is common knowledge within the disability community, but a foreign concept outside of it: Anyone, at any time, could become disabled.”

“If the non-disabled majority understood that they, too, could at any point develop a chronic illness that rendered them unable to work, surely disability assistance rates below the poverty line would be politically untenable.”

“The current approach to COVID-19 is simultaneously “removing disabled people’s access to public life while creating more disabled people,” writes American disability activist Charis Hill.”

Recent Federal #LongCovid Task force results:

ised-isde.canada.ca/site/science/e……

=1.4 mil Canadians & counting
=immune sys deregulation
=🫁🫀🧠 impairments, debilitating

#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

Recent Federal #LongCovid Task force recommendations:

ised-isde.canada.ca/site/science/e……

=Educate the public re #LongCovid
=Raise awareness with Schools
=Prevent #LongCovid
=💨upgrades

#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

Recent @CP24 #LongCovid interview with @ahandvanish ,

Co-Authour of recent seminal #LongCovid review in Nature with @EricTopol

https://twitter.com/ahandvanish/status/1616920833372340235?s=20&t=R8_VdJiQBKQ4yLUBrnXd9A

Nature #LongCovid review:

nature.com/articles/s4157…

#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

Government of Canada:

“The best way to currently prevent post COVID-19 condition is to take measures to avoid getting infected…There's currently no universally agreed-upon approach to diagnose and treat post COVID-19 condition.”

canada.ca/en/public-heal…

#LongCovid

PHO April 2022:

“Pooled mean prevalence for any experience of PACS (Post Acute COVID-19 syndrome or Long Covid)… ranged from 51-80%”.  

publichealthontario.ca/-/media/Docume…  

#LongCovid

#RealityCheck
#DavosSafe

#CovidIsNotOver

“Long Covid can be debilitating, even for healthy kids”

cnn.com/2023/01/14/hea…

#LongCovidKids

#RealityCheck
#DavosSafe

#CovidIsNotOver

Meta analysis in Nature

25.24% infected = #LongCovidKids

nature.com/articles/s4159…

#LongCovid

Australian news panel discussion

Frank assessment of human & economic cost of current #C19 policy & need to pivot

https://twitter.com/MamaToronto/status/1617551140253732864?s=20&t=gQqEUEcvl97NRBMJ7D_FUA

#LongCovidKids

#RealityCheck
#DavosSafe

#CovidIsNotOver

Article on recent frank Australian News Panel discussion & need to pivot current #C19 response

https://twitter.com/yaneerbaryam/status/1618422552858357760?s=20&t=gQU4e0dgxfrfZ5_0fczErg

#LongCovid
#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

What is #DavosSafe ?

🧵H/T @jeffgilchrist

https://twitter.com/jeffgilchrist/status/1618223851212767232?s=20&t=gQU4e0dgxfrfZ5_0fczErg

#RealityCheck
#DavosSafe

#CovidIsNotOver

Why we need to be #DavosSafe

🧵 H/T @TheTyee

https://twitter.com/MamaToronto/status/1613300087207395343?s=20&t=17gwMD_RA6Njo2JmzCALGA

#RealityCheck
#DavosSafe
#CovidIsNotOver

How we can be #DavosSafe

H/T @O_S_P_E

https://twitter.com/O_S_P_E/status/1611389403984691202?s=20&t=hGhXadhKOTcpSGYPamVzhw

#LongCovid
#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

How we can be #DavosSafe

🧵 Delphi Consensus

H/T @jeffgilchrist

https://twitter.com/jeffgilchrist/status/1608809251572715521?s=20&t=6VIUrjrPTytrLbXL4zvI5g

#LongCovid
#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver

How long Canadian decision-makers have been discussing #LongCovid

Vs

Public knowledge

An RTI request for records on #LongCovid & results 🧵

H/T @HallwayOrchard

https://twitter.com/HallwayOrchard/status/1592921357360451586?s=20&t=mYIOm9UKT8AxCQtj9o4pqg

#LongCovidKids

#RealityCheck
#DavosSafe
#CovidIsNotOver