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…
Parker was sued to change the claims, but the Wayback Machine, which archives old versions of websites, keeps the score. As a side note, their archival work is incredibly important, keeping people from changing history, & you can support them here: (4/12) archive.org/donate/
Now, the personal knowledge.
First, a participant in a trial gave me one of the how-tos for Lightning-Process-style CBT. It was chilling. (5/12)
First, your language is to shift to a self-blaming structure. If you think "I have ME", you should shift that to "I am doing ME". (There is no such thing as outwardly-imposed limitations. You yourself have chosen to have such limits & can let them go.) (6/12)
"They would never do this in another disease" - oh yes they would: Parker made claims that the Lightning Process could cure basically anything. I don't know if he's a True Believer, but that is what he sells to others: total control over one's reality. "There is no spoon." (7/12)
Second, when you experience a symptom, you shout "STOP!" at top of your lungs, and turn in a circle.
Yes, really.
This lets your body know you are Very Fed Up with your symptoms and simply will not tolerate them anymore. (8/12)
The Lightning Process has been called a cult, hypnosis, etc. I believe it works to the same degree that I believe people can be hypnotized to believe all kinds of things. The saddest story I know out of this process is a woman who believed it had cured her. (9/12)
I clicked on her Facebook -- like you do -- and found the same story repeated ad infinitum: she was "catching cold" over and over again. "I just catch the flu whenever I overdo it," she lamented. "It's a good thing I don't have ME anymore!" (10/12)
By reframing post-exertional malaise as catching the flu after exercise, she was still convinced she was no longer "doing ME". Maybe that made her happier; I'm not the one to decide that. But brainwashed was an accurate description. (11/12)
People have tried to legitimize this drek by doing studies on it. OF COURSE in the UK where apparently psychologists believe in fairies, but disappointingly, in Norway, too. Don't fall for scams, kids. (12/12) virology.ws/2020/08/27/tri…
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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)
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/
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
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/)
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)
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)