Share this page!

Hannah 🦈 Profile picture
Twitter logo
28 Sep 20, 17 tweets, 9 min read
The Spanish translation is out for our Patient-Led Research survey! uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

Please RT & spread widely!

¡RT y distribuye ampliamente! Abierto a cualquier persona que haya tenido COVID durante al menos 1 semana. No se requiere prueba positiva.

#LongCovid #COVID19
Spanish-speaking communities have been some of the hardest hit in the world - Colombia, Peru, Mexico, Spain, Argentina, and Chile are all in the top 12 affected countries, and the Hispanic population in the US has been disproportionately affected. Please share!
We are also excited to announce three other translations!

French: uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

S'il vous plaît RT et distribuez largement! Ouvert à toute personne ayant eu un COVID pendant au moins 1 semaine. Aucun test positif requis.

Please RT!

#apresJ20 #apresJ180
Russian:
uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

Пожалуйста, RT и широко распространяйте! Открыт для всех, кто болел COVID не менее 1 недели. Положительного теста не требуется.

Please RT!

#Ковид
Dutch: uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

Gelieve RT & verspreid op grote schaal! Open voor iedereen die COVID ten minste 1 week heeft gehad. Geen positieve test vereist.

Please RT!
These were all done by volunteers, many who were ill themselves, for whom we are just ridiculously grateful! ❤️❤️❤️
The Italian translation for the Patient-Led Research survey on #COVID__19 is here!

Per favore RT e distribuiscilo ampiamente! Aperto a chiunque abbia avuto COVID per almeno 1 settimana. Nessun test positivo richiesto.

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

#longcovid
Yayyyy the Portuguese translation for the #COVID19 survey is available! Please help circulate and RT!

Por favor, ajude a circular e RT, aberto a qualquer pessoa que teve COVID, nenhum teste positivo necessário!

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

#LongCovid
Precisamos da representação da Covid e da Long Covid do Brasil! Por favor, ajude a circular e RT, aberto a qualquer pessoa que teve COVID, nenhum teste positivo necessário!

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…

#LongCovid #COVIDPERSISTENTE #longhaulers
@dogarrett could you RT? :)
@sfadigacronica você pode ajudar? :)
The Indonesian version of the survey is available thanks to @jtuvanyx! Tolong bantu untuk beredar dan RT, terbuka untuk siapa saja yang pernah terjangkit COVID, tidak perlu tes positif!

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ… #longcovid #Indonesia
The Arabic translation for our #COVID19 survey (focusing on #LongCovid) is available! We need help circulating it - if you know any Arabic-speaking patients, please send this to them and RT! No positive test necessary.

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ… #فيروس_كورونا
الترجمة العربية لاستبيان # COVID19 الخاص بنا (مع التركيز على #LongCovid) متاحة! نحتاج إلى المساعدة في تعميمها - إذا كنت تعرف أي مرضى يتحدثون العربية ، فيرجى إرسالها إليهم وإعادة تغريدها! لا يلزم إجراء اختبار إيجابي. #فيروس_كورونا

uclcovid19.fra1.qualtrics.com/jfe/form/SV_cZ…
@cov_followup can you retweet? :)
#كورونا
@dhuwail can you retweet? :)

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Hannah 🦈

Hannah 🦈 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @ahandvanish

Hannah 🦈 Profile picture
14 Jan
#LongCOVID fam: it took me many conversations with patient #pwme to understand that ME is a full-body systemic illness.

"Chronic fatigue syndrome" was named by a dude who later apologized for the name's triviality. ME/CFS is as severe as LC & needs to be thought of as such. 1/
His apology:

2/
Check out these symptom lists for ME from 1990 and 2001 - they look familiar...

3/
Read 5 tweets
Hannah 🦈 Profile picture
12 Jan
This is an *excellent* piece by @math_rachel talking about the overlap of machine learning & medicine, & where it goes wrong, capturing such a wide range of issues.

This is required reading for ML folks, #MedTwitter, #LongCOVID, #NEISvoid, & everyone.

bostonreview.net/science-nature…
1/
It looks at flaws/biases in medical data (pulse oximeters are less accurate on POC, diagnoses of #EDS take 4 years for men but 16 YEARS for women), ML amplifies biases rather than counteracting them, algorithms that incorrectly cut health care with no method for recourse...

2/
...ways that this has affected #LongCOVID patients (I'd add that the focus on hospitalized patients only, or respiratory symptoms only, will be a huge problem if anyone uses ML for #LongCOVID at this stage).

3/
Read 9 tweets
Hannah 🦈 Profile picture
4 Jan
Everyone and especially #LongCOVID folks - this is an exceptional article by @jameshamblin about the link between COVID & sleep. I didn't start getting better at all until I was able to sleep again, ~4 months in. I strongly suggest prioritizing it. 1/

theatlantic.com/health/archive…
It's not mentioned in here, but the glymphatic system of the brain is what clears waste and toxins from the central nervous system, and happens primarily during sleep. A faulty drainage system seems to be one theory behind post-viral illnesses. 2/
ncbi.nlm.nih.gov/pmc/articles/P…
Impaired glymphatic function has also been linked to Alzheimer's. Here's a paper that gives more detail on "cleaning the sleeping brain" 3/

sciencedirect.com/science/articl…
Read 4 tweets
Hannah 🦈 Profile picture
27 Dec 20
Yay our #LongCovid paper is online!!!

medrxiv.org/content/10.110…

While we had a few thousand more fill in the survey, this paper focuses on 3,762 #longhaulers (sick >28 days) who got sick between Dec-May (to look at an average of ~6 months of data).

Some key findings:

1/
We looked at 205 symptoms over 10 organs systems (Neuropsychiatric, Pulmonary, Head Ears Eyes Nose Throat (HEENT), Gastrointestinal, Cardiovascular, Musculoskeletal, Immunologic, Dermatologic, Reproductive/Genitourinary/Endocrine).

On average, 9 in 10 of these were affected!
2/ Image
Of the 205 symptoms, we looked at 74 over time, looking at Weeks 1-4 and Months 2-7.

These graphs show the % of respondents who have reached each month who have these symptoms. Some of them go down (fever*, dry cough) while others don't. (*tho some have fever for months!) 3/ Image
Read 30 tweets
Hannah 🦈 Profile picture
7 Oct 20
I don't usually do these kinds of posts, and I hope that everyone understands my intentions are good here.

But.

In a data deficient landscape like that of #longcovid, one bad data study can create narratives that persist long after new, good data is created. I want to talk 1/
about one of these.

The Kings College symptom tracker is an app. Because they track symptoms over time, it gets a lot of citations on Long Covid prevalence, and also symptom prevalence.

But there are 2 *huge* issues with it:

2/
1) Because it's an app, it gets exhausting to use, and people stop using it. This is a known and public problem, understood by Tim himself:

3/ Image
Read 19 tweets
Hannah 🦈 Profile picture
13 Aug 20
One of the most jarring and upsetting things I've learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune condition called myalgic encephalomyelitis (ME), is particularly horrific 1/
A common feature of ME is something called 'post-exertional malaise' which basically means: after you do *anything*, you get extremely physical or cognitively fatigued & have to rest. Like, if you brush your teeth, or talk on the phone for 10 minutes, your body/brain shuts off 2/
A short walk can put you out for days. Some viruses/infection (including #LongCovid) include this type of fatigue (though "fatigue" doesn't really capture how intense and disabling this is), so post-viral issues don't become ME until at least 6 months have gone by 3/
Read 14 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!

Like this author's thread?

Get emails when @ahandvanish has new unrolls!

Check out other threads from @ahandvanish!

Read all threads by @ahandvanish