- 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.
So, most recoveries happen in the first few months. Do your best to help your body to recover. How? By rest & rest & rest.
It's been shown eg in Ziauddeen et al that inadequate initial rest is correlated w long covid later on. @Dr2NisreenAlwan, @Know_HG 4/ journals.plos.org/plosone/articl…
The mistake most of us from the first wave in Spring 2020 did was to exert ourselves, because we didn't know any better, because we were told to do so. This causes Post Exertional Symptom Exacerbation (PESE) or Post Exertional Malaise (PEM) that #pwME knew about all along!
5/
Yes, PEM/PESE is a very well known concept among #pwME and actually is the cardinal symptom for #MECFS diagnosis. Before the COVID-19 pandemic it was 10.4 times more likely to happen in ME/CFS than control groups.
For those unfamiliar w/ PEM: being sedentary doesn't explain the activity intolerance. In VanNess et al, within 24hrs of the test, 85% of controls fully recovered vs 0% of #pwME. The remaining 15% of control recovered within 48hrs vs only 1 ME patient
Initial cases of #LongCovid did not know about PEM/PESE.
In an urge to return to our 'normal' life, we were pushing our way towards pre infection baseline only to find ourselves more and more ill.
Until we stopped, listened, read and learned from the #MECFS community.
8/
In a cross-sectional study (of 477 participants mean age 45 years, median Long Covid duration was 383.5 days) Wright et al found that physical activity worsened symptoms in 74.84% of participants.
well, my thread had 20 tweets. It seems @Twitter ate the second half, and doesn't cough it up ... will add them later
According to Wright et al, unfortunately most of these harmful activities were recommended by health care providers!
Our intuitions are wrong too, since we're biased to think exercise can only do good.
Academic paper & social media know it, thanks to #MECFS
11/
No matter how light or heavy these activities are, they can exacerbate symptoms.
ADLs: Activities of Daily Living
MPA: Moderate Physical Activity
VPA: Vigorous Physical Activity
12/
Trickiest thing about PEM/PESE is that symptom exacerbation is usually delayed (few hours, next day) after the trigger. This makes it very difficult to see the pattern and detect the triggers.
And again, triggers are varied and can be both mental and physical.
13/
@PutrinoLab has two excellent threads on different types of PEM/PESE.
1. Metabolic-led, where metabolic dysfunction and cell exhaustion can cause a vicious cycle of inflammation, tissue hypoxia and symptom exacerbation.
where members share a wealth of experience and knowledge on how to navigate pacing and avoid frequent crashings.
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So, if you've had Omicron recently and are still struggling with lingering symptoms, first: I'm really sorry. Second: show down, rest and make it your priority to recover before it's too late.
Of course rest alone is not enough (depending on the damage), but it's essential.
18/
In another thread, I'll try to summarize what we know, so far, about LC sub-categories. No matter the underlying pathophysiology, pacing is essential.
#LongCovid sucks. It literally sucks life & energy out of Every Single Cell of your body. Avoid it. Wear 😷, avoid infection
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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/
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/
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/
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%.
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/
"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/
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/
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.
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%.