Neuroscientist at The Sainsbury Wellcome Centre, UCL, in London. Leading the "Learning, Inference & Memory" laboratory. Accidental advocate of #longcovid
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May 21, 2022 • 21 tweets • 11 min read
Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.
A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.
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Data suggest recovery after the first few months is infrequent.
Tran et al (France)*:
-Of LC patients who were still sick at 2 months, only 15% recovered by 1 year
-Of those who thought they were better, 33% subsequently relapsed
This is a shout out to all the staff at the #LongCovid clinic at @uclh. Yes, after almost 19 months I finally had my 1st appointment today!
First time that someone treating me actually knew about Long COVID, its all possible outcomes w\ clear insights into underlying causes
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A very thorough review of the disease trajectory over the past 19 months. They "listen" carefully (and compassionately) and are not surprised by any symptom!
That's because they've seen thousands of LC patients, so far, and are very well familiar with all the subtypes.
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Apr 5, 2021 • 9 tweets • 5 min read
We’ve updated our recent #LongCovid preprint with some new analyses, figures and data. I'm going to list the main updates here. #PASC 1/
Comparison of illness duration in cisgender female vs. cisgender male respondents. No difference. No evidence, in our cohort, indicating that any particular gender would experience Long COVID symptoms for shorter or longer period (unfortunately, not enough data for non-binary) 2/
Dec 27, 2020 • 32 tweets • 17 min read
And here is the preprint: "Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact"
Special thanks to thousands of you who participated in our study on #LongCovid.
In this work, we focus on 3762 cases w illness lasting >28 days & onset prior to June 2020, which gives us the chance to characterize symptom profile & time course over 7 months, along w the impact on daily life, work & return to baseline health 1/
Aug 1, 2020 • 7 tweets • 4 min read
An in-depth piece by @jcouzin, @ScienceMagazine on #LongCovid; excellent summary of various enduring symptoms, all we know and so much that we don't know.
Thx for giving me a chance to reflect on my experience & our patient-led research. 1/
“Everybody talks about a binary situation, you either get it mild and recover quickly, or you get really sick and wind up in the ICU,” says Akrami, who falls into neither category. Thousands echo her story in online COVID-19 support groups. 2/
Jul 17, 2020 • 8 tweets • 4 min read
Today marks 4months I'm struggling w #LongCovid. Right now: mild fever, nasty joint/muscle ache, racing heart, fatigue, brain fog.
Yes, I put up a happy face, pretend I'm ok, work & interact w friends/colleagues. But seconds later I'm down to my knees 1/
theguardian.com/australia-news…
w zero tolerance to physical activity (>10min walk = >1 week of high fever, SOB, debilitating joint pain, needling, extreme fatigue).
#LongCovid patients suffer from a wide-range of symptoms for several months, while receiving almost no medical support or treatment. 2/
May 12, 2020 • 14 tweets • 6 min read
After multiple relapses, I joined a #COVID19 support group -it saved my sanity & soul. There was a survey underway to aggregate experiences. I joined the effort and here's our 50p report on data from 640 participants.
Help us make it heard!
A thread
docs.google.com/document/d/1Km…1) 1 page summary
- important: we acknowledge that our survey pertains to subset of patients w prolonged recovery (it was specifically targeting those w recovery time of >2 weeks), so it cannot be representative of the whole population of patients. drive.google.com/file/d/1EPU9DA…
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