shelley-lee waller @shellchat
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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shelley-lee waller retweeted
Call me radical...
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shelley-lee waller retweeted
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/sc…
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…
@chydorina Agree entirely! As health declines, a first instinct is to delude yrself w “I think I can” thoughts. I relate to wanting to deny reality/live on that island at first…but the sooner you wake up to reality, the sooner you take meaningful action.(sooner u stop projecting on others)
@MarekSJF I think it’s heavily associated with the, if you believe you can, you’ll be more motivated to be more active, get sun, follow doc orders, rehabilitate…assuming of course, that everyone’s illness benefits (rather than crashes) from high motivation and movement propensity.
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
@globetrotteri Def an added complication. It was handy as I saw pain specialist last wk to assess radio ablation S1-L3 + steroids injections into SIJ. I’ve still got pain waking me all night and needed to describe the diff qualities/types.
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/2021/06/21/how… #PainAwarenessMonth #PsA #PAM2026 #LifeWithPain #ThisIsPain #axSpA #APS #Fibromyalgia #MECFS #arthritis
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.
shelley-lee waller retweeted
shelley-lee waller retweeted
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
@AndrewG76201347 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
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/neuro…
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
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/q1AF4bD1… #OccupationalTherapy #Physiotherapy
@deborahbrian Yep - started Tamiflu day after sx onset.
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?” 🙄
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jelloNcarrotsINcognit... @wellsjdan
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Peter Frederick 🐸�... @pjfred60
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406 Followers 2K Following Lately, I ask myself. Where have all our white knights gone? Where are all the heroes? Maybe, I'm just searching for an answer for the world's pains.
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Hannah Davis @ahandvanish
56K Followers 4K Following Research, algorithmic music, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
Prof. Akiko Iwasaki @VirusesImmunity
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S Blitshteyn MD, FAAN... @dysclinic
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Dr.Mukesh , MD , DM @dr_immuno29
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Ankylosing Spondyliti... @ASInfoShare
210 Followers 6 Following Information about Ankylosing Spondylitis
Spondylitis.org @spondylitis
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Kelly Boesch🏳️�... @kellyeld
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Carrie Anna McGinn @Carrie_McGinn
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Lalani Carlton Jones @NeuroradLal
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ICanCME Research Netw... @ICanCMEResearch
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Mark Mamlouk @MarkMamloukMD
3K Followers 299 Following Neuroradiologist @KPSantaClara | Volunteer faculty @UCSF | Interests: #CSFleak #vascularanomalies #pedsneuro #HNrad
Andrew L Callen MD @AndrewCallenMD
2K Followers 411 Following Associate Professor, Neuroradiology and Neurology - Director, CU CSF Leak Program - University of Colorado Anschutz Medical Campus - Alumni: UCSF - #CSFLeak
CSFLeakMatters @CSFLeakMatters
507 Followers 951 Following There is dignity in a diagnosis. Once a research & clinical OD and nationwide speaker, now a decade completely flattened by spontaneous Spinal Fluid Leaks.
Dan Scoffings @brainscandan
917 Followers 416 Following Consultant neuroradiologist & Clinical lead for neuroradiology @CUH_NHS | Special interest in #SIH and #spinalCSFleak
WouterSchievink @WouterSchievink
2K Followers 95 Following #CSFleak expert #neurosurgeon #spinalCSFleak @CedarsSinai Los Angeles #SIH [email protected]
Tomas Dobrocky @TDobrocky
569 Followers 196 Following Neurointerventional Radiologist. University Hospital Bern, Switzerland @StrokeBern
Spinal CSF Leak Found... @spinalCSFleak
3K Followers 520 Following A US 501(c)3 nonprofit org that helps raise awareness, educate, & support research on intracranial hypotension & spinal cerebrospinal fluid (CSF) leaks.
Monica Verduzco-Gutie... @MVGutierrezMD
26K Followers 7K Following Professor & Chair of Rehabilitation Medicine in SATX | #Physiatry #LongCovid | brain doc, mom, runner | my ideas
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6K Followers 495 Following In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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Dana Herbert @danaherbert
4K Followers 4K Following Dx: #MECFS #Narcolepsy #hEDS #AorticDilations #cPTSD #LongCovid #ANA+ #MysteryDentalLesions How I survived a tough CT dentist. Receipts + full timeline 👇
Tina Katsaros @tinakatsaros
1K Followers 243 Following PhD candidate researching ME/CFS at La Trobe University
Simon Maechling @simonmaechling
69K Followers 5K Following PhD Chemist 🧪 | 20+ years in R&D Chemistry • Biotech • Agriculture • AI Separating scientific evidence from internet nonsense.
sikandar adwani @SikandarAdwani
6K Followers 489 Following 🧠 Neurologist ( Gold Medalist) | 📺 Host of "Grey Matters" on you tube | Advocate for Brain Health and Awareness 🌟 Inspiring Minds, Empowering Communities
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187 Followers 52 Following General practitioner. Theories didn’t make sense. So I built one—with AI, neurodivergence, and resonance. #HFRT #Mind #Neurodiversity #AI
Complex Disorders All... @CODA_research
2K Followers 206 Following The Complex Disorders Alliance is an innovative, patient-founded, patient-focused, nonprofit dedicated to accelerating research for complex conditions.
Spinal CSF Leak Canad... @SpinalCSFCanada
994 Followers 380 Following 🇨🇦 National health charity with a vision to improve the health and lives of those suffering from Intracranial Hypotension caused by Spinal CSF Leaks.
CSF Leak Association @csfleakuk
1K Followers 938 Following The CSF Leak Association is a UK registered charity CCEW (1210442) and Scotland (SC046319) working to raise awareness of cerebrospinal fluid leaks.
Aravind Palraj @Rheumat_Aravind
16K Followers 2K Following SR in Rheumatology | MMC, Chennai | 🛑 Tweets ≠ Medical Advice | https://t.co/GIsNalCL0w
ME/CFS San Diego @MECFSSD
418 Followers 119 Following ME/CFS San Diego are patients and/or caregivers sharing information, support for each other, and education about Myalgic Encephalitis/ Chronic Fatigue Syndrome
Tweets @ChronicMyalgicE
1K Followers 787 Following Dutch | life derailed due to #IBD & #MECFS | sofa bound | on Twitter to raise awareness for post infectious diseases | one of the #MillionsMissing
Jack | amatica health @JackHadfield14
8K Followers 1K Following Aerospace engineer by training, ME/CFS & Long COVID researcher & patient, cofounder @amaticahealth. DMs open, rarely check follows - https://t.co/BvmsOvcOPX
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207K Followers 2K Following Science Video Creator, Tweeting about #LongCOVID as @diannahaze, MIT Physics, Forbes 30u30 https://t.co/BT5fDLf0LO
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10K Followers 4K Following Information & worldwide medical news updates about #Autoimmune diseases. #AutoimmuneAwareness #ChildhoodAutoimmune #Research https://t.co/P99YxE7PFETrends for United States
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