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/
And so I & others w' #LongCovid are painfully aware that this could be our future. We also owe so much to the #pwme community, who've been there for us with advice & answers that medical providers don't have; they have to do a ton of research themselves bc med orgs haven't 4/
ME is also really common. The estimates are that ~12% of people with a substantial infection go on to develop ME. There are millions of people worldwide, under the hashtag #millionsmissing because people with ME essentially disappear from their own lives due to this. 4/
Something like 75% of people with ME can't work. Many people with ME become housebound or even bedbound. For severe cases (~25% #SevereME), even light or the sound of a person's voice causes this reaction, so they are in bed with headphones and sunglasses and need 24/7 care. 5/
that's why I'm particularly in awe of @KaraJaneSings, who recorded an entire album one line at a time while bedbound with #SevereME. She has already hit #1 on the itunes charts and has until midnight tonight to hit the official charts. Please share! 6/
To learn more, vital resources are the #meawarenesshour hashtag, the MEPedia primer me-pedia.org/wiki/Primer_fo…, and @jenbrea's amazing documentary Unrest (on Netflix). 7/
(I'm learning about this all as I go, so please correct me if I got anything wrong!) 8/
One thing I got wrong: post-exertional malaise is worse than what I wrote! "Dehydration, muscle dysfunction, pain, immune symptoms & more...." 9/
This is a great description: "ME is commonly misrepresented as fatigue...but it's actually a state of illness with multiple multi-system symptoms (especially neurological, immunological and metabolic) which are exacerbated by minor energy usage." 10/
Several more good points "ME also features cognitive dysfunction (e.g. brain fog), unrefreshing sleep, orthostatic intolerance. Which means you can’t stand (or sit) up for long, or at all." 12/

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More from @ahandvanish

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

3/ ImageImage
Read 5 tweets
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
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
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
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
26 Jul 20
I just crossed the 4 month mark of being sick w' #COVID19. I am young, & I was healthy. Dying is not the only thing to worry about. I still have a near-daily fever, loss of cognitive function, essential tremors, GI issues, severe headaches, heartrate of 150+, viral arthritis, 1/
heart palpitations, muscle aches, a feeling like my body has forgotten to breathe. Over the past 124 days I've lost all feeling in my arms & hands, had extreme back/kidney/rib pain, phantom smells (like someone BBQing bad meat), tinnitus, difficulty understanding text/reading, 2/
difficulty following conversations, sensitivity to noise & light, nonstop bruising. *Thinking* can cause headaches now. I'm not alone in the cognitive issues; it's as common a symptom as cough.

No one knows when #longcovid patients aren't contagious; many are alone for months.
Read 22 tweets

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