#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/
Check out these symptom lists for ME from 1990 and 2001 - they look familiar...
3/
I understand that particularly in the UK, where it seems to be taken even less seriously, it's a scary diagnosis to get because it equals being dismissed/not getting care/being forcibly committed. But we need to be working together to fight that instead of being scared. 4/
#pwme have been dismissed for years & distancing ourselves from them is not the right thing to do, doubly so when our illnesses are so similar. 5/
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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.
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/
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/
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/
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/
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/
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:
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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:
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/
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.