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
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- Followers996
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Fascinating!
Chronic noise exposure may do more than harm your hearing.
New research linked repeated loud sound to dopamine neuron death and movement issues in mice, offering insight into how environmental noise could contribute to Parkinson’s disease.
Read more: bit.ly/3Xhya5f
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
ALT Two graphs from an Original Article published in the New England Journal of Medicine article titled “Ianalumab for the Treatment of Patients with Sjögren’s Disease.” The graphs show the change in ESSDAI score over time (full analysis population) for both trials, NEPTUNUS-1 and NEPTUNUS-2. The NEJM identity sits at the bottom.
shelley-lee waller retweeted
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.
shelley-lee waller retweeted
"IFN-γ–producing TH1 cells and dysfunctional regulatory T cells contribute to the pathogenesis of Sjögren’s disease. "
science.org/doi/10.1126/scit…
Probably a good reminder in this place. 👇
Because a truth not accepted or asked for does not minimise its validity, credibility or soundness.
No much how much time passes, the truth does not expire…
So much this 👇
"... If you don't have to factor in losing 40% of your day in exchange for A Thing, you have no right to comment
on my ability to do A Thing.
Credit: Women With Chronic lllness
#PainAwarenessMonth #PAM2026
#MySeveralWorlds #ArthritisAwarenessMonth
#MigraineAwarenessWeek
ALT "What abled people dont understand is that even if a disabled person manages to do A Thing, there is a cost for A Thing We had a family member hours today visit for 3 hours. I collapsed from pain and fatigue when they left and slept for 10 hours straight. If you don't have to factor in losing 40% of your day in exchange for A Thing, you have no right to comment on my ability to do A Thing. Credit: Women With Chronic lllness #PainAwarenessMonth #PAM2026 #MySeveralWorlds #ArthritisAwarenessMonth #MigraineAwarenessWeek
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.
This is crazy!
From The Australian:
"600,000 patients risk losing care over $220k grant".
A bit on the current state of things for #pwME in Australia.
#MyalgicEncephalomyelitis
#MEcfs
#GreatestMEdicalScandal
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
This has lots of handy hints for better describing pain to doctors.
As a veteran pain patient who has lived with pain for decades, this is what I'm asked most often. How do I describe my #ChronicPain to doctors?
🔗
myseveralworlds.com/2021/06/…
#PainAwarenessMonth #PsA #PAM2026
#LifeWithPain #ThisIsPain #axSpA #APS
#Fibromyalgia #MECFS #arthritis
shelley-lee waller retweeted
🏆 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…
Great news for future CSF leak patients (and hopefully 🤞 current ones too!)
Hard to put into words what this means.
A $50M gift to help us transform care for patients with CSF leaks.
I’m incredibly grateful, humbled by the trust, and feel an enormous responsibility to make sure this changes what is possible for these patients.
A remarkable day. And really, just the beginning.
news.cuanschutz.edu/news-sto…
shelley-lee waller retweeted
#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
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.
The sooner we vax for EBV the better - trouble maker in so many AI illnesses, many we don’t even know yet. ‘These findings nonetheless suggest EBV reactivation, when occurring within a genetically predisposed peripheral immune environment, is a proximal precursor of MS relapse.’
Wow! multiple sclerosis is caused by viral reactivation in monocytes and B cells months before clinical onset.
nature.com/articles/s41591-0…
Tell me how your doctor doesn’t understand ME/CFS, without telling me. I’ll start. My son with ME/CFS (ranging mod to severe) comes down w Influenza A and he offers a medical certificate for his part-time/mostly online Uni. “You’ll be right by Monday right?” 🙄
