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)
There appears to be a progressive form, which I DID mention in my quote but is missing from the article: people who stay very, very ill or even get worse, no matter what is done. We are not certain why. Finally... (4/6)
...in the same pgph my quote has been moved around to imply that I'm saying that when you reach this better baseline you might have symptoms but you'll be okay... that quote was in a different section and the implication in context was that DISABLED PPL CAN LIVE A GOOD LIFE. (5/6
That is all, thank you :) (6/6)

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More from @exceedhergrasp1

2 Dec
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
21 Nov
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
22 Oct
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
1 Aug
This boils down one of the most important issues with CBT: the unquestioned idea that the psychologist can tell what thoughts are appropriate or inappropriate in the context of the patient's reality. THREAD (1/)
Health anxiety often highlights the problem with this. If you are chronically ill, how often should you be thinking about it, and to what intensity? Often, newly diagnosed patients seem 'obsessed' to those who have a casual or zero understanding of disability. (2/)
Yet an intense focus when we're still trying to figure out what does and doesn't work for us is a natural & healthy reaction to the often intense onset of disability caused by chronic illness. (3/)
Read 7 tweets
2 Jul
Phoenix Rising had a series of pieces of advice for ppl (focus on women) with complex chronic illness in the average doctor's office. Some of it is of the 'tough pill to swallow' variety. Also be aware this is to GET BASIC CARE, not to change the medical paradigm! THREAD.
If you're a woman, bring a male partner or friend. Bringing a female friend, especially an older one, will infantilize you further in the clinician's eyes. Be ready for the clinician to address questions about your wellness to the man in the room. (1/7)
Look good but not elaborately so. Pick the median attention to detail re: outfit and makeup and go one step higher, the same way you do for a job interview.
"Shouldn't I look as sick as I usually do?"
Not unless you want to be dxed with depression or anxiety instead, no. (2/7)
Read 9 tweets
3 Apr
We had the space to do the research on viral infection transitioning to chronic, neurological disease before #COVID19. When we've cleared the acute outbreaks, there will be millions still sick, left without treatment or care. (1/13) #pwME
"How could we have anticipated this?"
The neuro disease #MEcfs has always been a time bomb. Up to 80% of cases are post-infectious. To see this coming, you would only need to know that someday soon, there would be a viral outbreak of some kind. (2/13)
Here's the math. COVID may have already infected half of the population of the UK, and previous projections estimated that half of the world's population would get COVID. Let's say that's so, for the purposes of argument. That's 3.9 billion humans. (3/13)
Read 13 tweets

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