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It'sME(Jaime) Profile picture
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1 Apr, 4 tweets, 1 min read
Lot of old studies on low IgG and/or low subtypes in pwME. The authors don't mention this has been found in other post-viral diseases -- do they know? Prediction: high IgE levels w/low IgA, classical in long-term viral and post-viral disease will be next to be "discovered". 😦
Pretty cranky today, sorry y'all. :(
....cranky enough not to recognize this is IgG antibodies to COVID specifically, and not levels in general per se. Lo siento
I will leave this tweetstream as a monument to my foolishness :D

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More from @exceedhergrasp1

It'sME(Jaime) Profile picture
3 Apr
Passing the buck in complex chronic disease is common #MedTwitter. There is no, single specialist who can help people with these multi-system issues: it's up to the GP to learn the best treatments, testing, & management advice. A RESOURCES🧵(1/13 #longCOVID #PASC #MECFS #NEISvoid
Moreover, we will see more & more of these patients in clinic post-COVID, and passing them from specialist to specialist ad infinitum is not care. (2/13)
(2/) #MedTwitter #MedStudentTwitter #longCOVID #PASC #MECFS
Many (though not all) people with #longCOVID will meet the criteria for #MECFS. Here are some resources I on this often post-viral disease. I hope you find these valuable and will them share widely. (3/13)
Read 13 tweets
It'sME(Jaime) Profile picture
5 Jan
Hey, I am looking for someone to help me with a project at the intersection of gaming, art, and disability advocacy/research. I've been hesitant to ask because we don't have a budget, but if you're in school & need a project for credit, I was a Prof. & can help u make that work.
If you know ppl interested in the intersection of gaming, design, and disability research, pls tag them. If you don't, pls retweet! If u are such a person, reply & let me know a bit about your bg/interests. #gaming #design #designtwitter #advocacy #DisabilityTwitter
Huge thanks to everyone who responded so far! Some additional details:
Read 7 tweets
It'sME(Jaime) Profile picture
4 Dec 20
Hey, another article y'all! I'm quoted a LOT. Overall it is a fantastic article, AND I have one important correction :) (1/6) scarymommy.com/covid-longhaul…
If you follow me on this birb app you probably already know what I'm about to correct:
*Anecdotally*, *in adults* -- but supported by my observations and the expert clinicians w/whom I've spoken about this -- the majority of patients have a really bad time of it at first... (2/6)
... but improve to a better baseline after the first, nightmarish year. Note that there are no studies to prove this to be the case: it's based off of our observations. Second, note that this is not true for everybody... (3/6)
Read 6 tweets
It'sME(Jaime) Profile picture
2 Dec 20
Apropos of nothing, here are a few things that people with #longCOVID should know about the pseudoscientific Lightning Process. TL;DR? Grifters gonna grift. Want more? Read on. (1/12)
The Lightning Process is a mish-mash of "neurolinguistic programming", marketing tactics, and grift. According to Brian Hughes, "it exists b/c commercially-minded providers of pseudoscientific treatments have successfully identified a market for it."(2/12) thesciencebit.net/2019/09/11/my-…
Parker, inventor of the process, taught courses that identified him as a "clairvoyant spiritualist" before he focused his grift on sick people, claiming he could “help you to completely recover permanently" from ME with “no possibility of relapse”. (3/12) buzzfeed.com/tomchivers/ins…
Read 12 tweets
It'sME(Jaime) Profile picture
21 Nov 20
Sealioning "disguises itself as a sincere attempt to learn & communicate..." but = incessant, bad-faith questions. It is a tactic designed to exhaust a target community's patience, attention, & communicative effort in an attempt to portray the target community as unreasonable. 1/
Sealioning in its current incarnation is a pretty new phenomenon, because in part it depends on the nature of social media: while this may be the sealion's umpteenth communique with the same person or tight-knit community, outsiders may only see the point at which the target 2/
"inexplicably" runs out of patience. Because drama is what is shared/amplified (by both the target community AND the sealion), it's this explosion that then becomes the message, the last word. 3/
Read 7 tweets
It'sME(Jaime) Profile picture
22 Oct 20
For all my interactions with people with chronic illness, I have never interacted with a chronically ill hypochondriac -- that is, someone who IS sick but invents additional symptoms or catastrophizes their existing ones. CW/TW: gaslighting. A THREAD. #MedTwitter (1/15)
I've met one or two healthy people with a morbid fear of ~becoming~ ill, but they don't invent symptoms: they worry they'll catch things. "This milk is one day off -- what if I get botulism?" Their fear is oriented to the possibility of one day becoming ill. (2/15)
But there is one person whom I know who everyone believes to be a hypochondriac though I strongly believe she is not. And it breaks my heart every time I think about it. (3/15) #neisvoid
Read 20 tweets

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