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CovidSolutions
@covidsolutions.bsky.social

Nobody's going to "the power of positive thinking" their way out of this. #LongCovidIsCumulative 👇 bsky.app/profile/dani...

Danielle Beckman@daniellebeckman.bsky.social

Negative trials matter. This study successfully removed GPCR autoantibodies from #LongCOVID patients, but symptoms didn't improve. That challenges one autoimmune hypothesis, though not autoimmunity as a whole. Question: Does anyone know of other GPCR immunoadsorption studies underway?

thelancet.comImmunoadsorption Versus Sham Treatment for Post-COVID Syndrome: A Randomised Sham-Controlled Crossover TrialImmunoadsorption was not effective in reducing symptom burden in post-Covid syndrome.
Emily Johnson
@emilyrj.bsky.social

Your writer has proven he is not competent to write about long Covid via the article (as multiple sources said it misrepresented them, and several LC condition experts called it out as inaccurate and misinfo), and in the writer’s posts defending the article from criticism it’s time to retract it

Emily Johnson
@emilyrj.bsky.social

Same writer behind “students are faking disabilities to get accommodations” food intolerances aren’t real” www.celiac.com/celiac-disea... Who said long Covid is psychogenic then responded to massive criticism from Long Covid condition experts this week with “there is no such thing as Long Covid”

celiac.comA Review of: The Gluten Lie - And Other Myths About What You Eat by Alan Levinovitz, PhDSeveral years ago, Dr. Levinovitz contacted me by telephone, asking if he could interview me then, and in subsequent calls, for a book he was writing about gluten consumption. Assuming he, as an acade...
Emily Johnson
@emilyrj.bsky.social

@katie-drummond.bsky.social is WIRED paying attention to patient harm and clinician slander from your writer, Alan Levinovitz, in defense of many Long Covid condition experts and patients criticizing his long Covid piece? How many unethical actions does he get a pass on? bsky.app/profile/emil...

Emily Johnson@emilyrj.bsky.social

Well buckle up because he said today that he’s going after EDS (hEDS specifically) and MCAS In particular EDS/MECFS patients with brain/spine issues because the expert neurosurgeons are “exploitative” and surgeries are “dangerous” Some highlights: This is so fucked up, @wired.com make this right

Amanda (Dr. Bubs)
@amandafolk.bsky.social

Wow. I’ve always expected more from Wired. As a former ultramarathoner who has been stopped in her tracks due to long COVID, including POTS and MECFS, I’m shocked you’d post such a harmful article. Dr. Leinovitz is not an MD.

Amanda (Dr. Bubs)
@amandafolk.bsky.social

I also have advanced degrees from a divinity school, and it is no qualification for dispensing medical advice. This is incredibly reckless. I suggest you consult the Institute for Neuro-Immune Medicine and Dr. Nancy Klimas to publish a piece that is medically accurate. We are suffering terribly.

L D
@winniedonuts.bsky.social

So.. I think long covid is not a singular disease. I think people with various predispositions to auto-immune disorders, even eczema, react differently to viral infections. I had a light infection (like a mild cold), and the was down for 5-6 months post infection with chest pain, palpitations, dizzy

L D
@winniedonuts.bsky.social

But I got advice from another long covid patient to take antihistamines/ go on the low histamine diet. this resolved my symptoms almost immediately. It was something like MCAS - my mast cells were going bananas. There's a study by some nurses who discovered that over the counter antihistamines help

L D
@winniedonuts.bsky.social

But other people seem to have something genuinely different that what I had. And I think the antihistamines are only helpful for like 30 percent of ppl. I think it isn't just one thing.

Emily Johnson
@emilyrj.bsky.social

You are correct. The definition of long Covid includes mast cell disorders (MCAS is one) among many other biophysical conditions that are common to the long history of infection and immune associated chronic conditions. recovercovid.org/news/expert-...

recovercovid.orgExpert committee proposes a new working definition of Long COVIDThe National Academies of Sciences, Engineering, and Medicine (NASEM) recommends that researchers, healthcare professionals, and government agencies adopt its new working definition of Long COVID to h...