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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/ https://twitter.com/KaraJaneSings/status/1293624847638188032
To learn more, vital resources are the #meawarenesshour hashtag, the MEPedia primer https://me-pedia.org/wiki/Primer_for_the_public, 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/ https://twitter.com/8Homeslice8/status/1294043098247503872
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/ https://twitter.com/8Homeslice8/status/1294045092270022656
A thread from someone with ME 11/ https://twitter.com/uncleweed/status/1294208105597693954?s=20
Several more good points "ME also features cognitive dysfunction (e.g. brain fog), unrefreshing sleep, orthostatic intolerance. Which means you canât stand (or sit) up for long, or at all." 12/ https://twitter.com/MillionsMissgFr/status/1294037243775131648?s=20
