PhD: trauma+CanLit. Currently: public health + policy student, epi + stats geek.

Kwikwetlem territory
Joined November 2011
🚨 My new paper on small fiber #neuropathy in NONPAINFUL conditions is published. Neuropathy is traditionally defined by neuropathic (tingling, numbness, burning, shooting) pain, but there are neurologic and non-neurologic conditions where objective findings of small fiber neuropathy are highly prevalent despite the pain being absent or minimal. I outline comprehensive treatment options for small fiber neuropathy with both evidence-based and emerging therapies in the Table. 🧠 clinmedres.org/content/24/3/…
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Lucia Lorenzi (she/they) retweeted
Israeli occupation forces have been using this “foul odorant,” known as skunk liquid, since 2008 against Palestinian crowds, homes, shops, schools, hospitals, hotels, restaurants, neighbourhoods, and even funeral processions.
🚨BREAKING: A highly foul smell spread across Gaza City overnight, leaving residents searching their homes and tents for its source. Social media platforms were flooded with complaints from Palestinians reporting the same unbearable odor across large areas, from Al-Tuffah and Al-Daraj in the east to Beit Lahia in the west. According to journalist Yousef Fares in Gaza, Israeli military aircraft dropped hundreds of bubbles carrying the foul-smelling substance across these areas, deliberately contaminating the air and spreading the odor among residential areas.
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🏆 Here is a beautiful study of 17 patients who presented to the ER with abnormal movements and other neurologic problems and were misdiagnosed with #FND. It turned out that... all 17 patients had #dysautonomia and most improved with dysautonomia-targeted treatment! 🎉 The authors conclude that patients presenting with abnormal movements should be evaluate for dysautonomia and not be mislabeled with FND. P.S. I was not involved in this study or its publication, I promise, but my experience directly parallels that of the authors'. 😂 frontiersin.org/journals/neu…
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rest in peace sam, i’m so sorry your care couldn’t be better to help you. you and your advocacy will never be forgotten. thank you for all that you’ve done for the community. i really hope things are kinder on the other side ❤️‍🩹🕊️ #millionsmissing
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doctor: in rare cases, patients will experience these things patient: i've been experiencing those exact things for some time now. i've logged it and brought the log with me to review with you and discuss next steps doctor: lmao ok so what makes you think you're so special
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We need to normalize shaming asshole celebs that think shitty behavior is hilarious. DONALD SUTHERLAND DIED OF COPD. This isn't funny??? Like what the fuck am I missing, why are they laughing at this?? 🤦‍♀️
Keira Knightley reveals everyone secretly broke the no-smoking rule on set, so Donald Sutherland wore a gas mask to a party so everyone else could smoke. Keira Knightley: There was a party that Donald Sutherland came to because the whole thing was that you weren’t allowed to smoke. Rosamund Pike: Oh, yes! Keira Knightley: He had it in his contract that nobody on the set was allowed to smoke anywhere near him, and you couldn’t smell of smoke. But of course, everyone smoked. Keira Knightley: Back then anyway, everyone smoked. We’d all run off to smoke, then spray ourselves with everything to cover the smell. Keira Knightley: But at the party he came to, he walked right into the middle of it wearing a gas mask! Rosamund Pike: Because he knew everybody… Keira Knightley: Because he knew! He said, “I want you all to be able to smoke, and I wanted to come to the party.” So we were all smoking, and there he was in a gas mask!
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1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany. It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.
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We're so close to inventing TV
Netflix is considering adding always-on TV channels, like ones that play shows or movies from the same genre, similar to what Tubi and Peacock does. vulture.com/article/netflix-…
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i wouldn't even call it similar to anxiety tbh its just an eerie certainty that you're going to die/something is irreversibly Wrong. anxiety is more like excessive rumination on a train of thought and spiraling. impending doom is basically seeing the light
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i understand the point of this post but i also think many of you absolutely do not understand that impending sense of doom is an incredibly different feeling than anxiety
it’s really cool how they teach EMTs that an “impending sense of doom” is a serious symptom of many life threatening conditions/events and then you get to the hospital and they say you’re just anxious
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🧠 Excellent illustration of "we don't know everything - or much of anything - about the brain." Some patients with neurologic symptoms may have vitamin B12 brain deficiency with normal vitamin B12 levels in the blood. Many of these patients would be diagnosed with "functional neurologic disorder (FND)." 🧠 Neuroscience and neuroimmunology are rapidly expanding: scientific advancement supersedes clinical care, which is why I keep repeating the same sentence: #POTS, #MECFS and #LongCOVID should be viewed as neuroimmune disorders. We need more studies to conclusively prove this concept. tandfonline.com/doi/full/10.…
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I find it so bizarre that people think it’s more important to be shielded from the thought of bad things than to be given the tools to deal with them. The pandemic response has been all about shielding people from anxiety rather than protecting them from a harmful virus.
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We have discovered that Alan Levinovitz's new book has already sold to publishers And it's about psychogenic illness. No wonder he thinks Long Covid is 60-80% psychogenic & why he won't reconsider his framing. He is invested That a major publisher @HenryHolt is running this raises serious concerns
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Thanks @amyrochlin for your thoughtful comments and sharing our paper! I agree with everything you said with one caveat: while we all want biomarkers and improved diagnostic tests, waiting for this has stalled progress in our field. We can't wait any longer, our patients can't wait any longer. Time to move forward with novel and repurposed therapeutic trials using what we've got. I look forward to working with Pharma on this: there is a large slice of patient population that needs treatment NOW! 💉🧬🩺
A few things come to mind. One of the most important lessons from modern medicine is that progress follows biology. Patients with diabetes aren't asked to prove their illness through symptom questionnaires alone. We measure glucose metabolism. No one diagnoses a heart attack based solely on fatigue and chest discomfort. We measure biomarkers, blood flow, and tissue injury. We don't debate whether skin cancer exists because a patient reports a suspicious mole. We examine the tissue, study the biology, and make a diagnosis. The path to treatment has always been the same: understand the biology. That is why I find the comparison in this paper between complex disorders and multiple sclerosis compelling. The transformation of multiple sclerosis did not occur because people became more sympathetic to patients. It happened because researchers developed tools that allowed them to see the disease. MRI revealed lesions. Immune profiling uncovered underlying mechanisms. Biomarkers provided objective measures of disease activity. Biology changed everything. Complex disorders are in the midst of the same scientific ambition. The future is not asking physicians, researchers, policymakers, or society to simply believe patients more. The future is generating a level of biological understanding that makes these diseases impossible to ignore. In this paper there are excellent highlights for deeper testing and I agree, we should be investing aggressively in: • 7T MRI to visualize the brainstem and autonomic control networks• • PET imaging to understand neuroimmune activity and neuroinflammation • Advanced immune profiling to characterize the cellular and molecular drivers of disease • Cerebral blood flow measurements to quantify physiologic dysfunction • Longitudinal studies that connect biological changes to patient outcomes (oh how we need these). • I'd also add AI-driven research to add speed and depth These technologies and approaches give us the opportunity to move beyond broad symptom categories and begin identifying the biological pathways that drive illness. Medicine advances because better biology leads to better diagnostics. Better diagnostics lead to better clinical trials. Better clinical trials lead to better treatments. Better treatments lead to health. That is how we transformed diseases like multiple sclerosis. That is how we transformed cancer. That is how we transformed cardiovascular disease. And that is how we will transform and treat complex neuroimmune disorders. When patients ask me why research matters, when all they need is better care: This is why. Better science drives better care. And the exciting part is that we can do this now. We have technologies that previous generations of researchers could only dream of. We have advanced imaging. We have immune profiling. We have AI. We have wearable devices. We have large clinical datasets. We have unprecedented computing power. The challenge is bringing the data, technologies, researchers, clinicians, and patients together in ways that allow us to see the biology more clearly. That is why expert collaboration matters. No single lab, institution, specialty, or dataset will solve these conditions alone. Progress will come from connecting expertise across neuroscience, immunology, autonomics, imaging, computational biology, and clinical medicine. The opportunity is here. @CODA_research is following a specific path: finding answers for patients. CODA CCD unites 8 experts in the field and then will go out to 50 more experts on the best ways to evaluate and treat craniocervical dysfunction. Immune studies (Anktiva and Inspiritol) are based on specific exploration of biomarkers, subgroups. Vagus nerve modulation shows huge promise for RA - how do we bring it to our diseases. AI data specialists - both internal and our partners - are using multiomics and clinical data to subtype and get a clearer picture of underlying biology. This is just a small amount of where we're going with our partners. And we partner with as many leading scientists and other foundations - we believe we are stronger together. One of the greatest moments we had this year, was coming together with @actionforme Schmidt Initiative for Long COVID, @PlzSolveCFS @weandmecfs to get a massive @DecodeMEstudy long-read genomics study launched - with an amazing £4.5 invested by th UK govt because of this partnership. That wasn't my idea - it was @SonyaChowdhury and team's brilliant idea and we were glad to be a part of it. I have a child in this space and I talk to patients every single day who are suffering beyond measure. I know patients can't wait for better care. The more we work together, the more experts engage, the better we can use science to accelerate real progress and the more people we can help. Quickly. Thank you @dysclinic et. al. for the paper. And @BrainInflCollab for calling it out for me this morning. buff.ly/HqR7NKH
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This @WIRED piece is a clear illustration of the drawbacks of journalism as a method of investigation. It seems the general procedure for media coverage of contentious issues is to call up a few carefully preselected people, listen to their anecdotes… 🧵1/
Six years since the height of the pandemic, the scientific community remains baffled by long Covid. But there might finally be a way forward for long Covid treatment—if only you were allowed to talk about it. wired.com/story/the-painful-…
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La realidad de este país es una homofobia y transfobia absoluta. Miedo a las diferencias. Terror ante lo que no comprenden. Odio, matanzas.
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in canada, mind body practices dominate medicine to the extent that my endometriosis excision was delayed by an additional 3 years bc, at my hospital, we have to complete a mandatory program that includes MB techniques before going on the surgery waitlist
This has practical implications for patients, very damaging ones. It discourages investment in real treatments and real research. It encourages doctors and friends/family to treat our illness as “in our heads” and something be visualized away
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Wonder why you can’t get medical care in Vancouver as a complex illness or chronic pain patient? The doctor who runs the complex illness clinic is literally teaching the ER doctors that you just have BPD and to refuse you care. 🙃 Skip to 17:00.
Replying to @arianek
Ugh. The link to my old thread failed to post and search isn’t working - here’s the YouTube link to the video though, start at the 17 minute mark for the section where he says all the complex illness patients have BPD and not to provide ER care: youtu.be/E7d6ZrqWOWM?si=7ytZ…
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