Discover and read the best of Twitter Threads about #longhaulers

Most recents (24)

Well, a crying child slowed me down, but better late than never. Excited to see @RanaAwdish @WesElyMD @hopealuko @BrendaPun

Rana: "Wanting the patients to be comforted and having almost nothing to do that except for the medications..." #COVID19 #chest2020
'are coma and deep sedation just markers of severe ARDS?'
@WesElyMD - absolutely NOT- they are independent!
#chest2020 #COVID19
Oooh. @hopealuko - we should be careful about what is 'severe' or 'mild' #COVID19 -- listen to patients! #CHEST2020
Read 19 tweets
If you're missing this great lecture on "After COVID: Complications of a New Infection and its Aftermath" by @WesElyMD @RanaAwdish @hopealuko and Brenda Pun, make sure you catch the video! #CHEST2020
@RanaAwdish: There was much fear early in the pandemic. Fear of using PPE, wanting the patient to be comforted and having only medications to comfort them. But this may have been harmful. #COVID19
@hopealuko: #COVID19 symptoms can linger for some patients. #CHEST2020
Read 8 tweets
1/ A few thoughts on how disruptions to our health systems are impacting birthing people 🤱🏾

(taken from today's public @NIH_ORWH committee meeting)

VIDEO:… NIH Presentation Title Slide: System Disruptions to Childbir
2/ So far, it is unclear whether pregnant people are more likely to be severely INFECTED by COVID-19

Regardless, pregnant people are definitely more likely to be severely AFFECTED by COVID-19
3/ Pregnant people do not appear more likely to become severely infected but early data suggests possibly more likely to have prolonged symptoms -- see data from @yafshar and the @UCSFMedicine PRIORITY team in @greenjrnl

read @edyong209 on #longhaulers 👉🏾…
Read 15 tweets
1/ THREAD: GABA, Neuro-#COVID, & the Immune System

New preprint from Drs. Tian et al @UCLA w/ cells from Dr. Stanley Perlman @uiowa raising some very interesting neuro questions that I have been obsessing over lately:…

@angie_rasmussen @VirusesImmunity🧠
2/ “Early GABA treatment immediately after #coronavirus MHV-1 infection was very effective in preventing illness progression and death, suggesting a rapid effect of GABA on innate immune responses and/or the lung airway cells.”

@GreenJournal @Tim_R_Nicholson @EricTopol
3/ Does GABA given to mice competitively bind to the GABA receptor (over MHV-1), which resulted in decreased viral intensity?

Does giving GABA down-regulate the neural excitation elicited by the #virus? Or interfere by another mechanism?…
Read 25 tweets
I’m concerned about the growing tendency in some circles to equate #LongCovid with #MEcfs. I think this is bad for both #Longhaulers and ppl living with ME/CFS. A thread. 👇
2. Before I start, let me be clear this is not a swipe at the #MEcfs community which has been hugely supportive of #Longhaulers, sharing tips & resources & lots of moral support. I am very grateful for that support.
3. Nor is this to deny the reality that some #Longhaulers have developed or are on track to develop #MEcfs. We know from the first SARS that this could end up being a significant number of #COVID patients.
Read 26 tweets
Dear @realDonaldTrump
You act like a child. You just potentially sacrificed the lives of two secret service members for a joyride. #TrumpCovid

I had #COVID19. I would have done anything to get outside my house for a ride. But that would have been bad for others.
I sweated through my clothes.
I coughed so hard that I pulled a muscle.
I was lucky enough to get a test.

But mine was a false negative. So, I couldn't get investigational therapies. Image
I too was on #dexamethasone . But unlike you, I was on it in March. It happened to be the only steroid I can handle.

I was irritable, and as tired as I was, I couldn't sleep. I didn't have my family here
Read 7 tweets
Thread #Covid19 is not just creeping back quietly in many parts of Canada. Some argue that higher numbers simply reflect more testing. Others argue fewer (proportionately) getting sick or dying vs 1st wave. Some facts 1/…
The test positivity rate is indeed lower than in the spring when it peaked at 11% in April. It is now 2% but much "dilution" due to ⬆️ proportion of kids tested vs spring when schools were shut down. Note %+ve now ⬆️in older age groups = trouble ahead 2/
This heat map shows clearly where this wave is being driven by age group. Highest (4.6%) of new cases are < 40 and now "leaking"(2.5%) into more vulnerable older age groups. This will continue to worsen without immediate change in transmission patterns 3/
Read 11 tweets
Mein Sohn erfährt demnächst seine post-CoVid19 Untersuchungsergebnisse (er infizierte sich Ende März während der Arbeit mit an CoVid19 erkrankten Patienten)...
Heute war er zum Thorax CT - und der Radiologe zeigte ihm auf dem Röntgenbild Veränderungen an seiner Lunge 😞

Mein Kind ist 23 Jahre alt, er hat(te) keinerlei Vorerkrankungen.

Während der Infektion bekam er ziemlich Probleme, es ging ihm überhaupt nicht gut u.a. durch heftige Luftnot und starke Hustenanfälle; auch die ‚typischen‘ Symptome machten ihm zu schaffen...

Read 12 tweets
I found this article earlier and I can’t shake the feeling that I have seen the woman in the middle picture before…

So I decide to do some digging
Tanya Northridge, 40, is a GP in Brixton
Maybe I haven’t seen her before
A web search tells me this is the only picture of her
And according to the one person who reviewed her on she isn’t a great doctor
It seems as though she exists only for this article
I found that odd so I decided to take a look at the other doctors the article claims age being affected by #longcovid
This is where it gets interesting
Read 16 tweets
Programme on #LongCovid on @BBCRadio4 this morning. Treatment unlikely to involve a prescription for medication; instead work with a physiotherapist and psychologist. Patients better start getting used to self-management and inadequate/inappropriate support from NHS. 1/ #r4today
Presenter's claim #LongCovid is "a brand new illness" is not strictly true. Some symptoms ie. respiratory damage clearly relate to Covid-19, but many more symptoms #longhaulers suffer clearly resemble the post-viral illness par excellence #MECFS. 2/ #r4today
#MECFS is conspicuous by its absence from this discussion of #LongCovid. Is it deliberately being ignored because #longhaulers are keen to avoid the stigma/disbelief/neglect people with #MECFS still experience from some medical professionals? 3/ #r4today
Read 6 tweets
Irish interview with Johan Giesecke. Interviewer @boucherhayes seems to have a solid grasp of epidemiological confounders, and Giesecke denies giving advice (paid?) and admits he spoke without any research into local conditions.…
Gisecke's testimony, where he clearly *is* giving advice…
1. wait a year to compare countries

2. soft lockdown like Sweden can be effective

3. don't build a strategy based on a vaccine

4. you should allow controlled spread in groups under 70
5. keep your schools open

6. poor & marginalised get hurt most by disease

7. covid isn't that mysterious.
Read 7 tweets
1. This is a thread for my fellow #Longhaulers who are about to lose access to the #CERB on Saturday. I know some are quite worried about financial supports so this is a look at your options. As you'll see, it's quite a dog's breakfast. #COVID19 #LongCOVID #ApresJ180 #cdnpoli
2. The first stop is Employment Insurance Sickness Benefits. #EI eligibility was frozen in March, so if you were employed or self-employed but paying premiums and had accumulated enough hours for eligibility, you will now transition to EI sickness benefits.
3. It's not clear yet whether a medical note will be required if your illness is due to COVID-19. If it is, it can be signed by a doctor, psychologist, or chiropractor. You do not need a diagnosis to get a note (although you do need a sympathetic health care provider).
Read 17 tweets
Here's something on #longhaulers and there's a @long_covid to follow if you need it.

Additionally, there are people posting losses & deaths to try to memorialize & make real the 200,000+ people who have passed away due to COVID. Thank you.
"But we’re losing the ability to track the virus—new antigen tests are difficult to track, there’s been less testing overall, and there’s still no reliable information on who is being tested."

From Tom Friedman on COVID now in the US.

And this tweet about a 21 year old having a heart attack due to COVID. Interesting information down the thread, so keep on going.

H/t @lunch_at_mimos
Read 3 tweets
Update Day 184: The Six Monthiversary of my onset of symptoms.

I'm happy to report that three of us are asymptomatic and Kid 3's cough is so sporadic that she's nearly asymptomatic.

#COVID19 #Longhaulers #LongCovid #ApresJ180 #CovidandKids
I will probably use asymptomatic for a long while rather than recovered, because as we've seen before, being symptom-free now doesn't mean they won't come back. I also remain paranoid about things like rashes & hugely swollen bug bites, although there's no reason to believe...
they're related to Covid. It will just take a while for the anxiety reflex to go away.

As for me, I'm having a really good week, including lengthy periods of the day where I have no symptoms at all and others where my only symptom is tinnitus.
Read 7 tweets
#COVID19 #CoronavirusDE
Wenn hingerotzte Tweets viral gehen 😂🙈
Hier sind die Quellen für meine Zahlen.
Anteil Asymptomatischer.
Das Problem ist, prä- von asymptomatisch zu differenzieren. Darauf wurde in dieser Metaanalyse (20%) geachtet:… /2
Hier allerdings auch und man kam auf 15.6% asymptomatisch Infizierte, was sich mit der Kupferzellstudie des RKI deckt (18.6%).…… /3
Read 17 tweets
Y’all I’ve gotten some great insight regarding COVID. Over the past few nights I’ve made some observations. And COVID is more of a vascular problem than a pulmonary problem, but the two are closely linked. (Thread)
I first noticed I would feel good during the day, but absolutely horrible at night. I wondered why I never had a cough. I now believe cough is a late sign of COVID. The first sign is actually fatigue.
What is actually happening is gradual (my theory) CHF which leads to pulmonary edema and then the pneumonia (reminder just a theory), but I came to this conclusion after years on a cardiac floor and after noticing a few patients who did better sleeping in a chair.
Read 14 tweets
Journalists frequently ask me if my family is pursuing antibody testing to prove we had COVID. Draw up a chair and let me tell you why that question is so problematic.
#Longhaulers #LongCOVID #ApresJ150 #CovidAntibodies
2. A negative antibody test doesn’t necessarily mean you don’t have antibodies and it certainly doesn't mean you didn't have COVID. First of all, the accuracy of C19 antibody tests has been questioned by the CDC and others. Some C19 antibody tests have a high false negative rate.
3. For instance, some of the tests authorized by the FDA have a sensitivity rate under 90% - which means if 100 ppl are tested, 10 or more will be told they don’t have antibodies when they actually do. And that’s the rate reported by the manufacturer, not the rate in actual use.
Read 20 tweets
We need to talk about #LongCovid.

Many who had #COVID19 continue to experience complications long after their initial illness.

In this🧵below, I expand on what @angie_rasmussen and I discussed in this @ASlavitt podcast to outline what we do know and what needs to come next...
In that episode, you’ll notice how often we say “I think “ instead of a definitive “we know”.

But that doesn't mean we don't know a lot. We can draw from similar illnesses and the growing body of research, especially the patient-led work being done by #longhaulers themselves.
So first, what ARE ‘long-covid’ and chronic covid?

There’s no formally accepted definition, but post-covid (#LongCovid) includes those who haven't returned to baseline ~3 weeks after the onset of first symptoms.

And chronic covid includes those months out with ongoing symptoms.
Read 47 tweets
COVID Update September 7: The best way to overview what’s going on w people w long term #COVIDー19 symptoms is to let people with #LongCovid speak for themselves.

And I gave a few things to say too. 1/
As with many viruses, some people experience symptoms long after their initial diagnosis. Known as #longhaulers, it can be rough going as symptoms can impact the nervous system, heart, lungs, gut, smell/taste, kidney, brain, immune system, energy.

Mental & physical symptoms.2/
Today I gave my account over to amplifying people’s stories.

And to my surprise that offended some people. 3/
Read 25 tweets
COVID Update September 6: There’s a lot of Twitter mansplaining about herd immunity.

Here’s what it means. 1/
I actually think it means one of several things depending on who says it. 2/
1. The first thing it means is “This is too hard. I give up. We might as well just get it dear & get it over with.”

Tired of missing your football games? Aching to go to the BBQ? Believe in herd immunity. 3/
Read 27 tweets
Six weeks ago, I heard there were kids getting Covid and not getting better. Like the adults we've been hearing about, they were long-haulers. At the time, I couldn't find a single article about it. So I decided to do it myself #LongCovidKids #longhaulers…
The stories I heard from some of these parents broke my heart. Their children have been sick for months, they don't know when--or if--they'll fully recover.

#LongCovidKids #LongCovid #longhaulers…
As one mom worried, "We could have a catastrophic level of chronic illness among our children that may impact them forever."

#LongCovidKids #LongCovid #Longhauler…
Read 10 tweets
I've been sick since April, lost hearing in one ear, had "sudden cardiomyopathy" (aka #BrokenHeartSyndrome), then was dxd with #CongestiveHeartFailiure. I fear I will never get well. About 40% of people with #COVID19 have heart or kidney problems happen.
Trump is now shopping the narrative, created for the #RNC2020, that #COVID19 is not that big a deal & that in "99% of cases you just recover." But that is in fact, false. @CNN reported Monday just how extensive #longhaulers are now--and how they are predominantly people under 50.
Also, most #longhaulers had no #PreExistingConditions prior to getting #COVID19.
Part of Trump's re-election strategy is to diminish the impact of his catastrophic mishandling of #CoronavirusPandemic. Hence the revisionist RNC story of how he & Pence saved "millions" of lives.
Read 5 tweets
I spoke to @maywarren11 of the @TorontoStar about the need for better research and care for Cdn #Longhaulers. One of the most fascinating nuggets in this piece is the difficulty that the CANCOV study has had finding participants:…
I'm part of three different forums with Cdn #Longhaulers, two of which have thousands of members. We all shared the information on the study as soon as we learned of it - and then we all shared the massive disappointment of discovering we could not participate.
Canada's massive screwup on testing back in the early days of the pandemic is still having an effect now on patients' ability to access medical care, sick leave and disability supports, and now its delaying the research into our condition.
Read 4 tweets

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