Sam
89 posts
Sam
@sublimepilgrim
Dad, security engineer, LC since 2020
เข้าร่วม Nisan 2014
2.8K กำลังติดตาม3.4K ผู้ติดตาม
Fourthed. Give Wayside Scribbles a follow now!
Wayside Scribbles@waysidescribble
Thirded. (Though I admit a certain bias here.)
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@The2Margarets She's talking about the disease having '6 stages', she will not help you get better
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@sublimepilgrim enough to let it advise me. But she’s back to being active and I’m stuck in bed after running several red lights last week. 🤷♀️ Right now, she’s sharing, like “hey, I tried nicotine and I feel better.” If she ever starts the psychological grift, I’ll join you in being upset.
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@The2Margarets Her posts are sprinkled with fake advice. Some replies mention neuroplasticity, and look inauthentic. She has a website with a course in progress to be available soon. Nothing she says makes any sense.
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@sublimepilgrim To be fair, she isn’t selling a thing. She used AI to improve her pacing and to manage her supplements. I know we’re sick of grifters but it looks like she’s just sharing her technique for free.
I haven’t seen your posts in ages, btw. I hope life is being kinder to you lately.
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Sam รีทวีตแล้ว
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it. wired.com/story/the-pain…
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This is bureaucratic abuse and intimidation. Shaming patients to silence them. Prime example of abuse of power and coercive control from a psychiatrist, it's worrying because he likely has power over many patients
No Tyler, we will not be silenced. Here's one for you to submit 🖕🏼
Tyler Black, MD@tylerblack32
I would submit all of the extremely angry replies to his thought out article as evidence. It's so stifling that the mere suggestion of mental health assistance with long covid could prompt such anger. In any other chronic disease with significant suffering, mental health plays a role.
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We've watched some of the weakest members of this community get abused by the medical field and the biopsychosocial model. Now some psychologizers are tone policing us and complaining about how we are too angry.
Folks, you have every right to be angry. Rage, and keep speaking up.
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@tylerblack32 @MeganTStevenson Tone deaf comment, and ignorant about the history of these illnesses and how much harm has been done. If you educated yourself you'd know where this justified anger comes from. But you didn't, and now you want to tone police. Maybe chose a different space.
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There's a weird phenomenon in the social media age, where people can think sweeping generalizations about a group are legitimate because some members of that group are assholes on the internet
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@dryostradamus Exactly. Seems like all the psychobabble crew is out in force. They want their moment of fame, and we just crushed their dreams with facts and links to actual research.
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@sublimepilgrim Why are they coming out of the woodwork now?
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When we are done with our trial, I am going to write a book about the vitriol and nastiness in the Long COVID and post COVID vaccine syndrome world.
It is all about competition and zero/none collaboration.
Also everyone has conflicts of interests. Even your academics with fancy degrees and swanky offices in ivory towers. I know because I work in that world too.
Hannah Spier, MD@hannahspierMD
I’ve written about controversial topics for years. But the vitriol is never worse than when I touch on: -ADHD / AuDHD -Alcoholism -ME / Fibromyalgia / Long Covid The sheer viciousness of the personal attacks reveals how deeply these labels become tied to identity formation.
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@hannahspierMD Maybe because you do it for the reaction? To get exposure you would not get otherwise? Compare that to the praise real researchers get from that same community. And to the discussions around research that actually matter. What have you done other than trolling?
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I’ve written about controversial topics for years. But the vitriol is never worse than when I touch on:
-ADHD / AuDHD
-Alcoholism
-ME / Fibromyalgia / Long Covid
The sheer viciousness of the personal attacks reveals how deeply these labels become tied to identity formation.
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@AlexWhiteGB Thanks Alex. This is for someone in the UK who was asking.
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@sublimepilgrim Best advice I can give you is find good labs that do tests in this area and ask for dr’s that do referrals to them for those types of tests. This is how I found my dr 15 years ago. ATP profile test was the test I wanted.
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@hannahspierMD That's what people who failed to read or understand the science say. If you need a way to stay relevant this is not it, you will get called out and your ignorance will be on display.
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This whole thread is now proving the point of protectiveness of the illness narrative!
I’m not saying you aren’t suffering. I’m saying these disorders have a deeper psychological origin and should be treated as such before it becomes your identity.
Hannah Spier, MD@hannahspierMD
One thing I have noticed about patients with diagnoses such as fibromyalgia, ME/CFS, and increasingly Long COVID is how often the conversation revolves around explaining why they cannot move forward. There’s an extraordinary effort devoted to protecting the illness narrative.
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