Former journo/editor, advocate for health equity, mother of two teens (Korean adoptees), p/time worker in health - full time šµļøāāļø sleuth of ME/POTS/MCAS/SjD
Brisbane, Queensland
Joined February 2011
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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 Parkinsonās 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 Sjƶgrenās 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 Sjƶgrenās Disease ā A First Step nej.md/4ivvs7E
ALT Two graphs from an Original Article published in the New England Journal of Medicine article titled āIanalumab for the Treatment of Patients with Sjƶgrenās Disease.ā 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.
Thanks for nailing the underlying assumption that in bodies that fail to return to homeostasisā¦āthat stress produces adaptationā - the exact right kind of adaptation. As usual, itās a failure to grasp just how complex and far-reaching the causal mechanisms may be.
shelley-lee waller retweeted
Dear @RACGPPresident, I support the call to immediately withdraw the HANDI guide entry titled āIncremental physical activity for chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (ME)ā.
Stop The Harm. Stop Graded Exercise Therapy for ME in Australia @RACGP.
shelley-lee waller retweeted
"IFN-Ī³āproducing TH1 cells and dysfunctional regulatory T cells contribute to the pathogenesis of Sjƶgrenās disease. "
science.org/doi/10.1126/scitā¦
Probably a good reminder in this place. š
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 expireā¦
Agree entirely! As health declines, a first instinct is to delude yrself w āI think I canā thoughts. I relate to wanting to deny reality/live on that island at firstā¦but the sooner you wake up to reality, the sooner you take meaningful action.(sooner u stop projecting on others)
The inane nature of the claims is apparent if you try it on other situations. Go on, just think yourself rich; or, youāll be thin if you just think thin thoughts; or you can become so clever if you just think you are! Society has just been desensitised to this wellness brand.
I think itās heavily associated with the, if you believe you can, youāll be more motivated to be more active, get sun, follow doc orders, rehabilitateā¦assuming of course, that everyoneās illness benefits (rather than crashes) from high motivation and movement propensity.
So much this š
"... 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
Def an added complication. It was handy as I saw pain specialist last wk to assess radio ablation S1-L3 + steroids injections into SIJ. Iāve still got pain waking me all night and needed to describe the diff qualities/types.
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
I hear you. Surgery last month, and another 2 planned to keep my mobility after an AxSpA flare went ignored too long and destroyed the discs in lumbar spine + SIJ + knee. It worries me every time.
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?
š
myseveralworlds.com/2021/06/ā¦
#PainAwarenessMonth #PsA #PAM2026
#LifeWithPain #ThisIsPain #axSpA #APS
#Fibromyalgia #MECFS #arthritis
shelley-lee waller retweeted
š 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!
š 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'. š
frontiersin.org/journals/neuā¦
