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Jo

@SEPfieldPatient

Australia Katılım Nisan 2013
1.1K Takip Edilen741 Takipçiler
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Mark Faghy
Mark Faghy@DrMark_Faghy·
After a slight delay.. our new article: Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID Is here: nature.com/articles/s4385…
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Kevin Deans
Kevin Deans@DeansKevin·
@angryhacademic A patient came to me recently after they read a case report in the literature and realised that it pretty much described their situation. The case report? Carroll et al, 2026. x.com/angryhacademic… What you do is making a difference where it matters most.
Harriet Carroll: Long Covid Scientific Consultancy@angryhacademic

Delighted to say that we (@cazd45 @DeansKevin et al.) have got our case study of post-vaccine syndrome updated: researchsquare.com/article/rs-142… Key takeaway is that within clinical pathways, we found evidence of POTS, MCAS, clotting, metabolic, and endocrine dysfunction 🧵

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Harriet Carroll: Long Covid Scientific Consultancy
As a patient-scientist I've had abuse hurled at me, had my scientific integrity questioned, and been accused of all sorts of things. I'm sure Iwasaki has experienced this too, but she has resources on her side & (AKAIK) she is not battling this awful illness on top of everything
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Harriet Carroll: Long Covid Scientific Consultancy
Indeed, had we listened to patients sooner, we could have some "clean" truly infection naive PVS patients to study. The problem runs deep as in my experience folks like me have numerous barriers:
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Jo@SEPfieldPatient·
@SalvMattera “Evidence based medicine” is fundamentally not functioning the way doctors and scientists believe does / it was intended to (to create higher quality care), rather it ‘mostly functions as weaponised denial of testing and treatment, or even trying to figure things out.
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Jo@SEPfieldPatient·
@SalvMattera Humans by nature just go through life in denial they could become seriously sick or disabled at any time.
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Salvatore Mattera
Salvatore Mattera@SalvMattera·
Why do people psychologize Long COVID? Why have people psychologized ME/CFS for decades? I have been thinking about this for a long time, and I think I finally figured it out. It's not that doctors are stupid or cruel. It's that the alternative to "you're crazy" is "our entire society is organized in a way that sacrifices people like you, and we know it, and we've decided the cost of fixing it is too high." Psychologization isn't a diagnostic error. It's a defense mechanism. Not for the patient, but for society. If a common virus can destroy a healthy person's life, then every school, every office, every restaurant, every airplane is a potential site of life-altering harm. That's an intolerable reality for a society built on the assumption that showing up is safe. So the person who got destroyed becomes the anomaly. The anxious one. The one with pre-existing vulnerabilities. The one whose personality predisposed them. Anything to keep the virus from being the cause, because if the virus is the cause, then every subsequent infection is a policy choice.
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Salvatore Mattera
Salvatore Mattera@SalvMattera·
I can only recall this quote: "If honesty were suddenly introduced into American life, the whole system would collapse." — George Carlin
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Prof. Akiko Iwasaki
Prof. Akiko Iwasaki@VirusesImmunity·
I wrote this piece to promote thoughtful, respectful, and rational engagement with controversial science topics. I hope it fosters constructive dialogue in the scientific community—thank you for reading and sharing 🙏🏼 @NatRevImmunol nature.com/articles/s4157…
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Tyler Black, MD
Tyler Black, MD@tylerblack32·
Both can be true at once. The diagnostic system can be over-inclusive in one population & under-inclusive in another, simultaneously. That's not a contradiction, it's just DIAGNOSTIC INEQUITY, and it's how nearly EVERY psychiatric condition behaves at the population level. /13
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Tyler Black, MD
Tyler Black, MD@tylerblack32·
But ADHD is also dramatically underdiagnosed in: * girls * adult women * minority kids * anyone whose isn't the textbook hyperactive 8-year-old boy. Inattentive presentations get missed for decades. Undiagnosed for years, they were failed by stigma and supposition. /12
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Tyler Black, MD
Tyler Black, MD@tylerblack32·
In short: ADHD is highly heritable, lifelong, biologically real, and treatable. The drugs lower mortality. If your take is "it's not real" or "everyone's just overdiagnosed now," you're roughly 30 years behind the literature. Catch up, hot stuff. /14
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Sam Connor
Sam Connor@criprights·
Today is Media Freedom Day. I dare you, media, to speak out about this. And I challenge politicians to accept the idea that it is okay to breach the data sovereignty rights of disabled Australians aka our new guineapigs, as well as kicking 300,000 people off the NDIS into an Australia with no foundational supports, with 204,000 jobs lost at the expense of AUKUS or refusing to tax billionaires. We are only just getting warmed up. Examine your consciences, people; and if you are devoid of one and complicit in this silence, think of your career. And wait - there's more dropping today. We are a third of the population. And no Australian likes being manipulated, lied to or spied on. I can guarantee you of that. #Robodebt #auspol #NDIS #RobodebtRoyalCommission #BudgetDay #Budget2026 @abcnews @SBSNews @GuardianAus @smh @theage @FinancialReview @australian @newscomauHQ @SkyNewsAust @9NewsAUS @7NewsAustralia @10NewsFirst @AAPNewswire @crikey_news @SatPaper @THEMONTHLY @MichaelWestBiz @independentaus @ConversationEDU @TheNewDailyAu
Sam Connor@criprights

x.com/i/article/2050…

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Prof Linda Gay Griffith
Prof Linda Gay Griffith@LindaGGriffith1·
Three cheers for Akiko Iwasaki and her breath of fresh air. If I go out and run 6 miles on a cold windy day, when I feel like I am coming down with the flu, then I get the flu due to overexertion when my metabolic and immune system were overtaxed already, that's on me. But when my PCP insists I need to get the flu vaccine - which I know I normally have a very severe reaction to, under the same conditions (of feeling like I am coming down with the flu) - and I get the flu (and then pneumonia), it is a similar situation: Body overwhelmed and pushed over the brink by a new major insult, in this case, the vaccine. Not really my fault (I agreed, but only after being bullied into it). But when I post on X that I had a vaccine injury, I am ridiculed, just for raising the issue that we should be more thoughtful about vaccine marketing (much of it does come down to marketing). OR - why does CVS substitute an mRNA vaccine WITHOUT SAYING THEY ARE DOING SO when a customer specifically made an appointment for NovaVax? And acts all irritated when the customer notices and insists on not getting the mRNA vaccine, but getting the NovaVax (this really happened, to me and my husband). We need to ask the question: where do we draw the line on how healthy someone must be to get a particular vaccine? Why are there such inadequate data available to the general public on risk-benefit of vaccines? Why is there so much pushback if you just ask these questions? I believe in vaccines and get vaccines. But would prefer to make an informed decision, as I no longer "believe The Science" as it has been twisted too much by marketing.
Matthew Shaw@matthewshaw1111

Yale Prof. Akiko Iwasaki writing in Nature: "Our inability to remain open and engage in rational discussions about controversial subjects may be eroding public trust in science." "I remember a colleague whose daughter developed a life-threatening autoimmune encephalitis after receiving the human papillomavirus (HPV) vaccine. I watched her struggle with obstacles in even asking whether her daughter’s illness might be linked to the vaccine. These questions are not only unwelcome in the field but also could jeopardize one’s career and credibility." "The pressure to stay within the consensus view is at an all-time high, for fear of reputational damage, funding exclusion and lack of career promotion, which is amplified at a massive scale on social media. However, there are broader epistemic consequences to staying within the consensus and suppressing alternative viewpoints, which could undermine trust and progress in science." "scientists are unable to freely inquire about the risk of [post-vaccine syndrome] without being labelled as ‘anti-vaxxers’." "True scientific progress depends on a culture that protects dissent"

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Matthew Shaw
Matthew Shaw@matthewshaw1111·
Yale Prof. Akiko Iwasaki writing in Nature: "Our inability to remain open and engage in rational discussions about controversial subjects may be eroding public trust in science." "I remember a colleague whose daughter developed a life-threatening autoimmune encephalitis after receiving the human papillomavirus (HPV) vaccine. I watched her struggle with obstacles in even asking whether her daughter’s illness might be linked to the vaccine. These questions are not only unwelcome in the field but also could jeopardize one’s career and credibility." "The pressure to stay within the consensus view is at an all-time high, for fear of reputational damage, funding exclusion and lack of career promotion, which is amplified at a massive scale on social media. However, there are broader epistemic consequences to staying within the consensus and suppressing alternative viewpoints, which could undermine trust and progress in science." "scientists are unable to freely inquire about the risk of [post-vaccine syndrome] without being labelled as ‘anti-vaxxers’." "True scientific progress depends on a culture that protects dissent"
Matthew Shaw tweet media
Matthew Shaw@matthewshaw1111

For people who still somehow deny that there is an extreme pro-vaccine bias in the scientific literature:

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