Athena Akrami Profile picture
Apr 5, 2021 9 tweets 5 min read Read on X
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/

@ahandvanish, @GinaAssaf, @LisaAMcCorkell, @herlifeinpixels, @YochaiReemMD, @Robotistry
medrxiv.org/content/10.110…
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/ Image
Comparison of symptom profile for cis Female vs cis Male:
Elevated temperature/fever shows the biggest difference (higher in F). Palpitations, tachycardia, chest pain, joint/muscle ache, memory & language/issues also higher in F. Otherwise, all other symptoms manifest equally.
3/ Image
2. Symptom severity and count in recovered vs unrecovered participants (both groups sick for >28 days). After the acute phase (first 4 weeks), recovered participants had significantly less sever symptoms and lower number of symptoms over time.

4/ Image
suggesting: 1. higher number of symptoms correlates w longer recovery, 2. LC symptoms can't be explained by “pandemic anxiety”, since that would apply similarly to recovered & unrecovered groups -response to some LC minimisers, claiming LC consists of generic pandemic symptoms
5/ Image
We further looked at similarities between participants w positive vs negative or absent test results. No significant difference between illness duration in Positive vs Negative or Positive vs All (includes those where testing was absent, as well as negatively tested).
6/ Image
And looking at the symptoms profile over time, once again we confirmed that the only difference is the “change in sense of smell/taste”, especially at the beginning of the illness, as they’re becoming equally common later in the disease course.
this figure shows Pos Vs Non-Pos
7/ Image
The same applies to Positive vs Negative (right) or Positive vs Un-tested (left).
We can take out the negative/absent group from our cohort & none of the conclusions changes for the remaining 1,020 positive cases. But we believe there's scientific value in keeping all groups.
8/ ImageImage
We have also included all the raw data tables (all the symptom prevalence and time course estimates).

9/

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More from @AthenaAkrami

May 21, 2022
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.

1/
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

*Non-vaccinated
2/
nature.com/articles/s4146…
Whitaker et al (UK)*:

- A rapid drop-off in symptom reporting by 4 weeks, a further, smaller drop by 12 weeks, but then very limited further decline (for up to ~22 weeks of study duration) for both men and women.

*Non-vaccinated population
3/

nature.com/articles/s4146… Image
Read 21 tweets
Oct 6, 2021
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

1/
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.

2/
And they have formed several working hypotheses for the aetiology of symptoms -- dysautonomia and mitochondrial dysfunction, at least, based on my and my husband's experience.

They work closely across disciplines, with multi-disciplinary teams (MDTs).

3/
Read 9 tweets
Dec 27, 2020
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.

a thread 🧵 0/

medrxiv.org/content/10.110…
>8k responded to our survey.

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/
Of the 3762 respondents, 2454 experienced symptoms for at least 180 days (6 months). 257 respondents (6.8%) recovered after day 28 of illness. In this Long COVID cohort The probability of symptoms lasting beyond 35 weeks was 91.8%.

2/
Read 32 tweets
Aug 1, 2020
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/

sciencemag.org/news/2020/07/b…
Some excerpts:

“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/
"Outpatient clinics for survivors are springing up, and some are already overburdened. Akrami has been waiting more than 4 weeks to be seen at one of them, despite a referral from her general practitioner." 3/
Read 7 tweets
Jul 17, 2020
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/
This experience has opened my eyes to a couple of painful realities in medicine:

1)Most doctors can only diagnose/treat based on known facts, & if pathophysiology of the clinical presentations are unknown, they just can't do anything. Physicians are not researchers, 3/
Read 8 tweets
May 12, 2020
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…
2) 90.6% of the respondents had not recovered at the time of survey. 60 who had recovered: average recovery time was 27d. The rest had been having sygmptoms for average of 40 days. Our “survival analysis”, shows that the chance of full recovery by day 50 is smaller than 20%. Image
Read 14 tweets

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