Former journo/editor, advocate for health equity, mother of two teens (Korean adoptees), p/time worker in health - full time 🕵️‍♀️ sleuth of ME/POTS/MCAS/SjD

Brisbane, Queensland
Joined February 2011
shelley-lee waller retweeted
Can't wait for our first ever FDA-approved drug for #Sjogrens! before end of year???? Before Convergence, Orlando?
In two trials involving patients with active Sjögren’s disease, decreases in disease activity at 48 weeks were greater with monthly ianalumab than with placebo, but differences in response rates and symptom scores were not significant. Full results of the phase 3 NEPTUNUS-1 and NEPTUNUS-2 trials: nej.md/3VU4TAp Editorial: Ianalumab in Sjögren’s Disease — A First Step nej.md/4ivvs7E
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shelley-lee waller retweeted
Call me radical...
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Replying to @ElizaCharley @RACGP
Dear @RACGPPresident, I support the call to immediately withdraw the HANDI guide entry titled “Incremental physical activity for chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME)”. Stop The Harm. Stop Graded Exercise Therapy for ME in Australia @RACGP.
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shelley-lee waller retweeted
Wildlife photographer Alan Murphy caught the moment this Great Grey Owl turned its head and shattered its perfect camouflage.. Reminding us that the woods are never truly empty.
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shelley-lee waller retweeted
Stop judging people with chronic illnesses by how you think they should look or behave. Dr Amir Khan once again hits the nail on the head. #ME #chronicillness
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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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#AssistiveTechnology for #MyalgicEncephalomyelitis We need your insight, please. 3 surveys for #pwME and #HealthProfessionals to help improve AT access. 💙 📅 Survey closes: 2 October 2026 🔗sh1.sendinblue.com/mk/sc/q1A… #OccupationalTherapy #Physiotherapy
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shelley-lee waller retweeted
Aurora Australis over the farmland near Busselton, Western Australia. I love it when the night sky lights up like this... it was so bright that I could see my own shadow on the ground at one point.
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shelley-lee waller retweeted
These new iron deficiency treatment guides may make it easier for you to get iron infusions for iron deficiency if you have inflammatory diseases. One may be able to get iron treatment at higher ferritin & TSAT levels if u share w article info w your clinicians. #Sjogrens 👇
📣New Ferritin cut-offs announced by the American Society of Hematology! 1) 4 ppl w Inflammation (Sjogrens/AI dz): <💯 or TSAT <20% 2) Kids 9mo-4y: ≤20 ng/mL 3) Adults/menstruating/preg: ≤30 4) High-risk: ≤50 Share w your MD ashpublications.org/bloodadv…
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shelley-lee waller retweeted
Dear sir, TY 4 the opportunity 2 work in the Turning Life Lemons into Lemonade Dept. I am now a master mechanic of the lemonade machine. TY 4 teaching me these skills. I tire of drinking lemonade. May I have a transfer to another Dept? #NeuroSjogrens #Dysautonomia #PAIS #ME
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shelley-lee waller retweeted
superpower.com/guides/nutrit… MMA: The Marker That Catches B12 Trouble Early
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shelley-lee waller retweeted
Annual flu, Shingles, Pneumococcal, RSV, & Tdap/Td vaxxes are associated w a remarkable decrease in Alzheimer's dz in studies. 15-40% reduced risk of AD. Could these vaxxes influence AD via these bone marrow/monocyte differences noted in ppl w Alzheimers? What mechanism?? 👇
Alzheimer’s disease disrupts myeloid cell production in bone marrow via type I IFN, preventing protective macrophages from reaching the brain nature.com/articles/s41593-0… nature.com/articles/s41593-0… @NatureNeuro @ADeczk @maabellanas @WeizmannScience @basurco_leyre @institutpasteur @unav
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shelley-lee waller retweeted
Martin Niemöller wrote his famous "first they came" lines about how the Nazis rose by isolating one group at a time while everyone else stayed silent — never enough of a target on its own to make the rest of the country flinch. Here's One Nation's version of that insidious pattern: When she said Australia was being "swamped by Asians," I did not speak up because I'm not Asian. When she called Aboriginal parents "lazy" and "negligent," and repeated the debunked claim that $30 billion is being funneled into Aboriginal handouts, I did not speak up because I'm not Aboriginal. When she said domestic violence victims lie in family court, called it a "two-way street," and claimed it wastes police time better spent on "real crime," I did not speak up because I am not a victim of DV. When she dismissed the gender pay gap, I did not speak up because I am not a woman. When she wore a burqa into the Senate to mock Muslim Australians, and said "how can you tell me there are good Muslims," I did not speak up because I'm not Muslim. When she blamed African gangs for crime that police data showed they barely contributed to, I did not speak up because I'm not African. When she told gay Australians they should leave the country if they wanted to marry; I did not speak up because I'm not gay. When she called the trans community a "militant force" and an "insurgency," comparing it directly to militant Islam, I did not speak up because I'm not trans. When she pushed to strip disability standards out of new homes, I did not speak up because I'm not disabled. When she called workers "lazy," I did not speak up because I am not lazy. When she voted against Same Job Same Pay, the Right to Disconnect, criminalising wage theft and industrial manslaughter, then took a $100,000 pay rise herself, I did not speak up because it wasn't my paycheck she was coming for. When she opposed the bill to stop supermarkets and big companies price-gouging Australians during a cost-of-living crisis, I did not speak up because I told myself I could still afford my groceries. When she voted against the Paris Climate Agreement, against investment in renewable energy, and against building community resilience to climate disasters, I did not speak up because the floods and fires hadn't reached my house yet. So when she finally comes for you — whatever's left of "you" once every group you didn't belong to has already been picked off — who's going to be left to speak for you?
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“If we were really becoming an immune compromised society there would be signs.”
The increasing number of younger patients with shingles has prompted debate about expanding free vaccination eligibility. mdsc.pe/4gTzaX0
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New guidance for NHS to distinguish between troponin levels in men and women, as women have lower troponin levels and are routinely told they haven’t had a heart attack when they have 🤦🏻‍♀️ bhf.org.uk/what-we-do/news-f…
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#ISLCPAIS2026 new abstract such high level scientific event. this abstract tells us what many people addressed in clinical practice. why some patients have impressive positive responses to immune modulation? It happens to me with IVIG the answer is that clearly a group of MECFS and long covid are clearly an immune mediated rheumatology like condition. the evidence around the immune system involvement is actually overwhelming. Also the evidence of massive responses in someone so far, IMHO, is much larger than the anti viral hypothesis
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shelley-lee waller retweeted
Where does fatigue really come from? Long COVID. ME/CFS. Lupus. Sjögren’s. Multiple sclerosis. Rheumatoid arthritis. Psoriatic arthritis. Axial spondyloarthritis. Systemic sclerosis. ANCA-associated vasculitis. Sarcoidosis. Inflammatory myopathies. Myasthenia gravis. Primary biliary cholangitis. Crohn’s disease. Cancer. Infectious mononucleosis. All of these are very different diseases. But many of them can produce remarkably similar fatigue. Why? Maybe we have spent too long studying “the fatigue of each disease” separately. And perhaps we should start studying the common biology of fatigue. (1/44)🧵
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