Jennifer Hulme
@jenniferhulme
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Physician, Assistant Prof @UofT Family & Community Medicine | Health systems | Health equity | Health in all policies | Long COVID/ME/POTS. Tweets are my own
Joined June 2009
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Here and Now Toronto with Gill Deacon - Feb. 7, 2024: Toronto emergency physician talks about living with
#LongCovid
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Denied life insurance due to
#longCOVID
. Pretty sure the insurance underwriters understand the risks of COVID better than public health and the general public.
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In the last 48 hours, 3 friends and 5 contacts have approached me for help with their teenage daughters / marathon-running Neighbours/ and partners who have become disabled by
#LongCovid
#POTS
. Some of these people are themselves physicians. This is major crisis.
#notacold
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4K
I diagnose
#POTS
every emergency shift, a condition that I didn’t know existed before two years ago.
MDs/PAs/NPs: do orthostatic HR for everyone with unexplained tachycardia.
#POTS
#LongCOVID
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3K
I’m seeing one patient per ER shift with new symptoms of
#longcovid
#POTS
#MECFS
; many have lost their businesses, their brain, their health, their dreams.
Thanks for coming to my Ted talk. We need a plan to prevent and treat
#LongCovid
@PublicHealthON
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3K
@michaelmina_lab
@CDCgov
Got the call from
@TOPublicHealth
this week saying that my toddler with Covid could return to daycare on day 5 if he was fever free for 24 hours. I laughed out loud. Attached are my RAT tests from day 6/7. Short isolation is the new hygiene theatre.
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Today three people with
#LongCovid
approached me for advice, all of whom are suicidal. Suicidal because of the excruciating symptoms, because the virus itself causes depression, because of hopelessness.
@NIH
@CIHR_IRSC
please treat this like the emergency it is.
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Friendly reminder from your local emergency doctor: 3% of vaccinated people (7% unvaccinated) will develop
#LongCovid
with omicron.
++ COVID circulating
We don’t have a cure. I’m seeing people with NEW long covid.
Hepa/vent/masks/cpc mouthwash=layer protection
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When a person with
#Longcovid
catches
#COVID19
again, it’s a big deal. It’s terrifying to lose ground, it’s horrific to have the worst long covid symptoms return. Some ppl become bed bound. Do not gleefully tell your friend that it’s a self limiting viral illness.
#notacold
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StatCan just dropped a bombshell report on
#LongCovid
. By 3+ infections, 38% report long term symptoms — that’s 1 in every 2.6 people. 🤯
Right now 1 in every 9 Canadians have
#LongCovid
. 80% have symptoms for longer than 6 months; 50% never recovered.
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@LLynneIrwin
POTS and MECFS have nothing to do with inactivity. In fact it often affects previously healthy active young people. Often triggered by infections, classically EBV, Lyme and now, at ferocious scale, COVID.
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Today is
#LongCovidAwarenessDay
This is one of the last photos I took before getting
#COVID19
350 days ago. The next photo was taken this week in a
#LongCovid
study. I could not have imagined this much suffering. Still hopeful for research to bring recovery.
#NotRecovered
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@LongCovidComms
@K_Bishof
This.
I should say I’m on disability (residual income), but the experience of others has been shocking.
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@WikiDocJames
This gets back to the critical issue of
#paidsickdays
@DecentWorkHlth
. We don’t have a home test for the flu (not saying Covid is the flu, but it will be endemic) but it’s still inconceivable that we allow people to work while sick with so few protections.
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I'm seeing patients today who 1) didn't consider
#COVID
before signing up to see the doctor (spoiler - likely COVID) 2) don't have rapid tests or know where to get them 3) Are immunocompromised and don't know that they would qualify for antivirals and/or metformin
#CovidIsNotOver
This is why patients are shocked when I mention COVID ("I thought it was over?"), including the patient I recently diagnosed in my office.
I have been asked: "well if COVID is still around, why don't I hear about it anymore?"
Because we are governed by cowards. That's why.
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Today marks exactly one year since my first
#COVID19
infection which left me disabled, brain injured and breathless until today. I’ve learned much about suffering, ableism, what makes a good physician, and made many new friends from the
#LongCovid
community to whom I am grateful
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Long COVID is a $1 trillion problem with no cure. Experts plead for governments to wake up
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Long COVID – a public health crisis taking out women at the height of their lives via
@HealthyDebate
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@MAbsoud
@itvnews
I’m a physician with long covid. Because of this, I know many whose children, esp adolescents, suffering form long covid, some unable to go to school. I’m interested in why you find this piece surprising. Of course, long COVID is heterogeneous. Bu it can be severe in children.
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@taimhuynh
To quote teacher friends: “half of the teachers I know have COVID19. How can you open schools when so many of the teachers are sick?” And if the answer is that teachers should go to work sick, then we have completely lost the plot and our humanity.
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@SylviaJonesMPP
insists hospitals are not in crisis.
Let me be clear: this is a crisis.
How do we solve this?
Legislate 10 permanent
#PaidSickDays
so patients can stay home when sick, seek medical care for preventable diseases, and reduce burden on acute care resources.
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@DeviJustice
People with MECFS die young, so… yep. Endothelial dysfunction and systemic inflammation doesn’t end well.
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@LLynneIrwin
It’s still more women than men. And it still follows the trend that we’ve least seen- adolescents- and younger people more affected. They have more G coupled protein antibodies….
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@Sonjalovesbikes
100%. I am very concerned. You are not alone. Lots of others
An example this week. A patient of my husband’s applied and was approved for
#MAID
. Severe mental health issues. Living in poverty. She changed her mind. This cannot continue while we abandon the social safety net.
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@KashPrime
Hi Kash I’ve been off work with severe
#LongCovid
. Once better I’ll try to organize rounds rooted in my experience and what I’ve learned. My point is the same as yours- it’s SO common, we need all healthcare providers at least aware of POTS/ME and treat symptoms as best they can
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@raghu_venugopal
Thanks Raghu. Covid outbreak on the wards. Saw a covid patient yesterday. But… where are the tests where and how to get paxlovid, should you take metformin, masking, enovid spray…. Crickets
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One of the first things people ask me when I tell them I’ve been disabled with
#LongCovid
is, “have you tried any naturopathic or allopathic treatments? How about your diet?”
…
If they are unlucky, I will have been fasting for 3 days when they ask me this.
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Exercise and “healthy lifestyle” do not protect kids from
#LongCovid
. Every day people reach out to me about their newly disabled, previously athletic kids.
This type of magical thinking prevents progress towards primary secondary prevention and cure.
Kelly (
@broadwaybabyto
) wants people to know about her experience and that even those who practise healthy living like she does still ended up with Long COVID and chronic illness ( ). 128/
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@Sonjalovesbikes
Many examples cropping up in the
#longcovid
community. People are running out of money and getting evicted as a result of long Covid disability and are applying for MAID. !!!!!
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@Sonjalovesbikes
I think athletes are at higher risk, but I have no idea why. Most of us have a story of going for a run a few weeks after infection and then never running again, but is that the reason, that we pushed too hard after acute infection?
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@SharkawyMD
@McDevonMD
My child woke up unable to walk with what is likely reactive arthritis post-COVID.
I have severe Post Acute COVID Syndrome, gone from being healthy to taking meds and supplements. Desperate to think, to breathe, to walk."Mild". No conspiracy, this is common, COVID19 real talk.
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@Sabrina_Poirier
metformin metformin metformin
nasal rinses
nasal sprays (carrageenan) and Enovid
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@NjbBari3
Can I ask you as an ID physician: why do you think other infectious disease experts are so blasé about post viral disability, and obsessed with hospitalization and death as the only metrics that matter? Because there isn’t a bio marker or treatment yet?
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@DFisman
I just got reinfected, a gift from my family, and I have long covid. I can tell these &^%$ that there is very good reason why we don't want "double long covid", or to be mocked by physicians.
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Can I just say how wonderful it is to see a doctor who is an expert in
#ME
and
#POTS
? Didn’t ask me to take off my mask. Asked relevant qs. Validation to the hilt. Even if they can’t do anything for me, it is still someone everyone with this illness deserves
#LongCovid
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What effective messaging looks like: see family and friends in small groups outdoors; when you can't space, use a mask. Avoid indoors, it's really unsafe. This is the moment for outdoor spaces like parks and trails. Delicious hot chocolate in individual mugs
@TOPublicHealth
100%
Outdoors are far safer than indoors. This is not a smart move...certainly not evidence based. We should be opening parks up and teaching people how to use them safely, not shutting them down.
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@ONThealth
This is absolutely false. Ed physician here. That’s why we bypass this and give iv Iron in the ED, so the patient doesn’t pay OOP. You want to reduce ED wait times? I have some ideas.
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@ericbkennedy
Cool! That’s how my husband got COVID and gave it to me, on a flight with zero masks! And now I’m disabled! But I’m so glad they got to have snacks
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@michaelmina_lab
@CDCgov
@TOPublicHealth
Let’s say I didn’t feel sick (I do, so sick): going back to work in an N95 and others in N95s, the likelihood of transmission would be close to zero. But a toddler eats snacks. Indoors. So to put public resources into promoting an arbitrary isolation time is very frustrating.
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@mcuban
The
#LongCovid
community needs support! A lot of the celebrities with long covid themselves are too sick to advocate, with the exception of
@Alyssa_Milano
who has been wonderful. Please, join us!
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In the ED we are haunted by seeing factory workers and teachers proned, struggling to breath, terrified of dying because they had the audacity to be
#EssentialWorkers
.
#PaidSickDaysNOW
#VaccinateEducatorsNow
and
#EssentialWorkers
@fordnation
@celliottability
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@iheartmemories1
@michaelmina_lab
@CDCgov
@TOPublicHealth
Rapid antigen tests are used in healthcare and many other settings as a marker of ongoing Infectivity. A PCR test can stay positive fir months because it measures dead virus.
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@GrittyNurse
@LeesaKlich
I’m so sorry for your loss. A wonderful person who works as an orderly (also Jamaican) finally got vaccinated after months of quoting YouTube conspiracy theorists. He said that because every doctor and nurse in the ER endorsed vaccination, and cared about him, he changed his mind
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@drgregkelly
@deonandan
@DFisman
Our friends’ child survived, but barely, she lost both of her legs. It’s hard not to take this “outbreak” and likely underlying immunological impact from COVID personally,
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@HHSGov
We need: intranasal vaccines, enovid and other sterilizing nasal sprays, CPC mouthwash, masking, clean air regulation with push and pull incentives, long covid prevention trials and treatment trials. Thanks
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@NohaAboelataMD
As a healthcare worker, at a hospital which still mandates patients and hcw masking, it’s sTILL exhausting enforcing this with my patients. I tell them pointedly that I have severe
#LongCovid
. They do not care, but happily put on the mask I provide. I can’t even
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@michaelwainberg
You shared an uninformed opinion, that concern about
#longcovid
causes Long COVID. Sigh. The problem IS your positionality as a scientist. Glibly downplaying a disabling condition that without an accessible biomarker looks like being an AIDS denialist in 1982. It's a bad look
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@EricTopol
@LancetRespirMed
As a physician, researcher and someone recovering from
#LongCovid
, this looks like some serious garbage unworthy of
@TheLancet
. This isn’t some complex interplay of psychosocial factors and physiologic changes, it is the direct, disabling impact of
#COVID19
on every organ system
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Post-COVID cognitive impairment and changes in children and young people is very concerning.
#CleanAir4Kids
#LongCovidKids
Prevalence and co-occurrence of cognitive impairment in children and young people up to 12-months post infection with SARS-CoV-2 (Omicron variant)
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@picardonhealth
@andrewphil
@TorontoStar
We need urgent help from the press to hold federal and provincial governments to account for access to
#COVID
RATs, treatment including
#metformin
and
#paxlovid
. Hoping we don't notice is unacceptable.
#CovidLong
#LongCovid
#covidisnotover
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When I obtained my MD over a decade ago, I also never dreamed that I’d be experimenting on myself. Yet here we are.
#Longcovid
#wherearetheRCTs
When I obtained my PhD more than a decade ago, I never dreamed I'd be experimenting on myself one day. Yet here we are.
#LongCovid
#Truvada
#Antiviral
#Guineapig
#GoingDownSwinging
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This has to be the most frustrating headline: Where did all of the workers go?
5-10% of the population suffers w/
#longcovid
…. about 1:3 of us can’t work, 2:3 work part time.
#COVID
is an economic issue as well as a human health issue. Prioritize prevention and treatment
Hey
@Bloomberg
you looking for myself and millions of others? We are at home dealing with COVID-19 residue
waiting for you to contact us and hear our side of the pandemic
#truth
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@fibromy
@graeme_0
@LCAIreland
I’m in Canada. Sorry for any confusion. But life insurance companies are global, locally regulated.
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@michaelwainberg
No, I don't. SARS-CoV-2 neuroinflammation and affects the microglia with resulting anxiety, depression, de-novo psychosis, etc. Is it surprising that people with a history of depressive disorders would suffer more? We a publishing a book this month with Wiley. Have a read.
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@echoey13
@cjmaddison
Yes; the risk of long covid is significantly higher in the unvaccinated indépendant of hospitalization and of course people like you who got sick before vaccines, but lots of us are triple (now quadruple) vaccinated and developed LC after mild infections.
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This, 1000 times over. “Don’t come to the hospital if you’re sick”….. but we can’t ask people to mask in clinical setting with older and immunocompromised people, or people like me, who has been disabled by this virus??
If you'd told me 25 years ago when I started medical school that in 2023, the only remaining hospital infection control of an airborne vasculotropic pathogen would be telling sick people not to come to the hospital, I'd have asked if law schools accepted neurobiology majors.
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#LongCovid
is not just driving disability, Income inequality and misery, it is also an underlying driver of the labour shortage
@PublicHealthON
@CDCgov
@ONThealth
OMG. 61.8% of Californian farmworkers have or had Long Covid, according to this study. These are our essential workers, who are often undocumented and have no health insurance or disability or any social safety net at all.
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@Caro_Dew_
The public health messaging is made worse by the fact that, if you did a PCR for your child for example, they will CALL you to tell you that you can stop isolating on day 5. Tax dollars to spread misinformation. It’s absurd
@TOPublicHealth
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@EIDGeek
This. 100 time over. In the ED none of us can tolerate what we are fitted for anyway for 8 hours. We also need communications on the fact that you can reuse kn95 / N95s so this doesn’t have to cost a fortune.
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@loscharlos
@abc7newsbayarea
@UCSF
@LongCovidSOS
@long_covid
@patientled
@MarkedByCovid
@Survivor_Corps
@LongCovidKids
Thank you for speaking up. Even amongst physician colleagues, if they survived their first infection(s) unscathed (and when you dig, MANY were, but not disabled) they don’t believe they can get
#longcovid
the next time. I don’t want to see more friends fall, but they will.
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I just got another message from someone isolated and impoverished by long covid /POTS/ME - has to hide it on social media as they are self employed, need to appear “reliable”.
Gaslit by everyone. The most social, exuberant person, told that she needs an attitude adjustment. Sob
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@CarlvKeirsbilck
I personally know multiple people at my work place with long covid and issues working full time. We are not lazy. We are disabled.
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Hair loss…. I lost about 50% of my hair volume with
#longcovid
and I don’t care, in any way, about the one symptom that isn’t debilitating.
The
#HHS
should mention brain fog, cognitive impairment, severe exercise Intolerance dysautonomia and eventual job loss. Please.
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@twpiggott
100%. I can say now as someone destroyed by day 7 of “mild covid” that even acute Infection, in and of itself, is a big problem. Healthcare workers can’t work, the economy suffers as workers are off sick; so many getting sick at the same time isn’t “mild”.
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@nataliesurely
Do you think… that some “FND” could be misdiagnosed post-viral syndromes with underlying patho physiological causes?
FND as a category for long covid isn’t on our radar because it has no biological basis and is the focus of a journalist trying to get attention.
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#LongCovid
: “It can happen to anyone”
“we need to urgently fund research”
@BogochIsaac
on The Morning Show
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@StrongholdMag
@karlitaliliana
“Contrary to the experience of millions of people with long covid, I have the answer”
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@deeokelly1
@chiefkicking25
Just block these people. They are bots or being paid to misinform.
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@davidemccune
As a physician with long covid, I can assure you that the secondary gain of immense suffering and disability is nil. Literally nothing. No income. No quality of life. But you would just need to read the medical literature and listen to patients to know this. Which is your job.
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The hardest part of this on same days is when my four year old asks “are you still sick mommy?” I think this is because he still remembers what I was like when I was healthy, pre-COVID. I don’t want him to forget what I was like.
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@klmatter
Interestingly, more and more people who have seen other physicians have "this could be long covid given x,y" on their charts. Others are very clear - covid - followed by multiple issues - MCAS, dyspnea etc.
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@michaelwainberg
The largest risk factors for Long COVID are being female, and unvaccinated. Children with Long COVID have severe depression when they are in an MECFS crash, just like adults.
@longcovidkids
do not have "psychogenic" or "functional" disorders.
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@NjbBari3
Roger that. I think physicians tend to be interested in things they can treat. I do some addictions, and nobody cared to know about OAT until we had suboxone, nobody cared to tread AUD until naltrexone was covered. So, we need treatments, I think, and fast.
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@GidMK
@loscharlos
This data is from EMRs. People who aren’t recovered with long covid and don’t get treatment stop going to their doctors. From, a doctor with long covid and health systems researcher.
We need the critical appraisal skills applied to other health problems applied to long COVID,
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@MAbsoud
By non child health people, do you mean cardiologists seeing the cardiac sequelae of COVID in adolescents? How is this messaging dangerous?
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@LisaEsther6
I know of someone’s grandmother that was forced to share a room in LTC with a known covid +ve person and, you guessed it… it’s provincial policy that we don’t have to isolate people with COVID in LTC. Actually.
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@GoodsandProvis
To all of use who have lost friends and loved ones to
#COVID19
; and to all of us health care workers who are exhausted including
@DFisman
- this is so hateful. To all of us in the east end - this is the way to alienate your customers. See you never.
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@twpiggott
I'll continue to wear a mask in high risk settings, as I'm covered in COVID many days in clinic and the ED, but have yet to get sick. Masks work! They protect me, my family and my community
#CareNotScared
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@michaelwainberg
@LongCovidKids
Indeed. post-viral illness including MECFS, MCAS, and POTS disproportionally affect women, as our immune systems are different. They often get mislabelled as functional disorders despite very clear science discrediting this.
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@Megan_Scribe
@NavPersaud
I love this. How many committees and memos before someone finds a truck…
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@LongCOVIDWebCA
At the first national
#LongCovid
symposium, clinician experts are asking for core-funded specialised clinics, integrated with research networks and biobanks, similar to what worked in the first decade of the
#HIV
epidemic. Urgently.
@ONThealth
@OntarioHealthOH
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@BradMBradford
You are talking over her, three times, in this clip. It’s like watching trump during the debates.
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@KashPrime
Multiple people in my life getting COVID in last 2 weeks. Those outside of Ontario, in Quebec and PEI had 1) difficulty accessing rapid tests 2) did not qualify for paxlovid 3) could not access primary care to get metformin.
Rant over. I prescribed. But so tired.
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@organichemusic
@shelleyjules
HR even when recumbent, or sat<96%, or both. Otherwise PERC rule could have avoided ordering the D Dimer which is often elevated in LC peeps. However if your HR > 100 even lying down, you need a CT-PE. Sorry for the attitude you encountered.
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Is the post-COVID-19 syndrome a severe impairment of acetylcholine-orchestrated neuromodulation that responds to nicotine administration? | Bioelectronic Medicine | Full Text
Who here has tried nicotine for
#Longcovid
?
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@moreisdifferent
@NIHDirector
1) GET is harmful in MECFS 2) Patients with PEM are excluded from this trial, because of the harms.
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@frozen
This is embarrassing. Even the
@WHO
with all of the confusing messaging is clear: someone dies of COVID-19 every 3 minutes, 1/10 people suffer some form of
#longcovid
, and this is a vascular disease affecting every organ. It’s the third leading cause of death in Can.
#notacold
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@ITV
MECFS and Long COVID: ignoring a condition which affects women, children, people at their "prime"....
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@BrooksFallis
@myrabatchelder
This is a brief CME/ orientation on
#LongCovid
, but if it reaches even one provider or patient then we have moved the needle a bit:
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These mothers and emergency doctors are struggling to take care of their patients – and themselves
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This is one of the most honest, useful, clarifying pieces on
#LongCovid
that I have seen to date. Thank you
@DrFahadRazak
@deonandan
@nyulangone
"We had more people die in 2022 in Ontario than in 2020 or in 2021 from COVID... an infection prevented is for the best of all of us." —
@DrFahadRazak
(
@UnityHealthTO
) at 11pm with Jennifer Frontera (
@nyulangone
),
@deonandan
(
@uOttawaHealthSc
) &
@spaikin
| Producer:
@ebombicino
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@saffronandsky
Like most of us, I can’t tell what helps or not, and in the absence of evidence for but because I’ve seen waxing and waning improvements, I’ll continue until I’m “cured”. This is why we need trials
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@GaryPWarren
One would hope that we could work on more than one public health issue at a time! Be maybe not.
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