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
🧵 HLA-B27 in Rheumatology: Tweet 1: “HLA-B27 — a genetic marker with a powerful reputation. From ankylosing spondylitis to reactive arthritis, it shapes how we think about SpA. But what does a positive result really mean? 👇” @IhabFathiSulima @DrAkhilX @CelestinoGutirr…
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shelley-lee waller retweeted
OMF has now received approval from the NIH to access plasma samples collected via the Chronic Fatigue Initiative, bringing the total number of samples for our large-scale ME/CFS biomarker project (BioQuest) to 1,000. 👉 Read the latest BioQuest update: omf.ngo/bioquest-updat….
Yes, the SjD clinical phase III trial had seronegative pts enrolled! Thanks for this update on #Ianalymab
Yes, the SjD clinical phase III trial had seronegative pts enrolled! Thanks for this update on #Ianalymab
“We really need to recognize how debilitating endometriosis is. How underfunded endometriosis is. And how hard investigators have to fight to be able to study this disease.” - KATIE BURNS UNIVERSITY OF CINCINNATI. Making discoveries, but at risk of being shut down by NIH cuts😩
“We really need to recognize how debilitating endometriosis is. How underfunded endometriosis is. And how hard investigators have to fight to be able to study this disease.” - KATIE BURNS UNIVERSITY OF CINCINNATI. Making discoveries, but at risk of being shut down by NIH cuts😩
“As busy clinicians, it’s easy to focus on more acute health issues in front of us. But if Sjögren’s disease isn’t on our radar, we don’t investigate for it, and we miss the chance to intervene before organ damage occurs…” MJAInsight
“As busy clinicians, it’s easy to focus on more acute health issues in front of us. But if Sjögren’s disease isn’t on our radar, we don’t investigate for it, and we miss the chance to intervene before organ damage occurs…” MJAInsight
Dear sjogren’s ppl - if u had new onset neck pain, base skull pain, TMJ/jaw pain + R knee hot, swollen (mri says severe degen changes in patellofemoral compartment + full-thickness chondral loss~> patellar facet n trochlea) - wld you think SjD related or something else? #sjogrens
shelley-lee waller retweeted
🚨 BREAKING: Japan Post is cutting off mail service to the U.S. Joining Germany, Austria, Denmark, Italy, France, and Sweden. That’s not a shipping delay, that’s a diplomatic middle finger wrapped in a postage stamp.
Very interesting - not a coincidence!!
Very interesting - not a coincidence!!
shelley-lee waller retweeted
Those who care for patients nearing the end of life, *please* explain to them & their carers what to expect during the final weeks. People think of death as an event instead of a progression, and unprepared families come to us terrified when symptoms of normal dying arise.
shelley-lee waller retweeted
Speak up for CALD communities. If you're part of the CALD Community combating ME/CFS or long COVID, we need your help. Share your experiences through our survey to help improve our services. Take the survey: vist.ly/447iv
shelley-lee waller retweeted
This is an urgent matter for all of us who are constantly gaslighted by HCPs. I am a strong advocate of this project, the only one in the world aiming to provide CME-accredited education to HCPs on ME/CFS and Long COVID. I am very optimistic about it, but it urgently needs…
This is an urgent matter for all of us who are constantly gaslighted by HCPs. I am a strong advocate of this project, the only one in the world aiming to provide CME-accredited education to HCPs on ME/CFS and Long COVID. I am very optimistic about it, but it urgently needs…
Rheumatologists need to step up. It is absolutely devastating to have all this duck-shoving between specialties like you and your illness is the “hot potato” or “stinky cheese” - while you deteriorate. Terrific Medscape article 👇
Rheumatologists need to step up. It is absolutely devastating to have all this duck-shoving between specialties like you and your illness is the “hot potato” or “stinky cheese” - while you deteriorate. Terrific Medscape article 👇
shelley-lee waller retweeted
New ME/CFS paper finished, submitting in the next day or two. Fingers crossed. A collab with Chris Armstrong. Melbourne ME/CFS research firepower 💪💪💪💪 Sweeping differences at even just a glance in a particular aspect of the biology that we’ve looked at here. Stay tuned.
shelley-lee waller retweeted
1/ 🧵 Most people think Sjögren’s disease means dry eyes and mouth—but did you know it can also affect your kidneys? Kidney problems in Sjögren’s are serious but often missed. Here’s everything you need to know. 👇 @IhabFathiSulima @DrAkhilX @CelestinoGutirr @JasmineNephro…
shelley-lee waller retweeted
In short: ME/CFS muscles pushed all systems harder (both mitochondrial and glycolytic) Long COVID muscles tried to adapt, but energy use was less efficient. Possibly due to Long COVID being earlier into the process?
shelley-lee waller retweeted
Learn about Post-Exertional Malaise (PEM), a condition common in ME/CFS and long COVID, causing symptoms to worsen after minor activity. Join our free course to understand more. vist.ly/43ert 💡
OMG - please 🙏
This is super helpful for perspective.
This is super helpful for perspective.
shelley-lee waller retweeted
🔬New @BhupeshPrusty paper breakdown - very cool paper: The study finds that people with ME/CFS & Long COVID have antibodies in their blood that may directly interfere with mitochondria (how human cells create energy and regulate inflammation) In simple language all findings 🧵
shelley-lee waller retweeted
Barcelona study with 13 participants found that healthy lab-grown muscle exposed to ME/CFS or Long COVID blood quickly lost strength, briefly boosted metabolism, then entered mitochondrial and structural collapse with prolonged exposure. iopscience.iop.org/article/10.108…
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05750xxxxxx @05750xxxxxx
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1K Followers 2K Following one day at a time 🦋 | ME since 2009| drastically deteriorated after vaccination and a covid infection | not anti-vax
Manuella Figuerra @manuellafiguer2
503 Followers 1K Following “Plutôt que de maudire les ténèbres, allumons une chandelle, si petite soit-elle.” #Confucius
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401 Followers 7K Following Money & macro, models & policy, German economy, formerly German Council of Economic Experts
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192 Followers 1K Following Caregiver & Organizer. Following COVID, Long COVID, MCAS, ME/CFS, POTS, and other disabilities.
Still Ill @shitthatzsays
367 Followers 7K Following #neisvoid I often delete old posts. Nothing personal.
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5K Followers 1K Following ex Aerospace Engineer, now ME/CFS & LC patient researcher and cofounder @amaticahealth https://t.co/BvmsOvch0p - email [email protected] questions
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2 Followers 48 Following
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45 Followers 3K Following Samantha's Husband. Brexton & Lennix's Dad. Driver of the No. 8 @RCRracing Chevy. 🏆🏆 2X Cup Series Champion
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T @Yrrepmot
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Jungkook BTS JK BTS @bts_jk76063
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56K Followers 4K Following Research, algorithmic music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
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213K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII
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S Blitshteyn MD, FAAN... @dysclinic
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Prof Brendan Crabb @CrabbBrendan
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Tweets @ChronicMyalgicE
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Jack | amatica health @JackHadfield14
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T @Yrrepmot
871 Followers 2K Following Barely living with #MECFS, and #ComplexChronicIllness including #PAIS #IACCs #CIRS #EDS #POTS #PSSD #TooTiredToThink #MUFC #Socialism
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Meiners PT, PhD @KellyMMeiners
2K Followers 871 Following *Physical Therapist, Athletic Trainer, CSCS, dedicated runner and mom. *disabled since 10/2021. Advocate for #LongCOVID, #POTS, #MECFS as able.
Vlad Vexler @VladVexler
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Nicholas Fabiano, MD @NTFabiano
102K Followers 632 Following Writing about science | ✉️: [email protected]
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Kelly @broadwaybabyto
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Natalie @PSSD_Info
303 Followers 784 Following Raising awareness about post-SSRI sexual dysfunction (PSSD). & interested in the connection between upper airway resistance syndrome (UARS) & ME/CFS/fibro/etc.
KC Martin-Stone @KCMartinStone
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CURE ID @id_cure
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Jane Bird @LindaLaHughes9
1K Followers 1K Following Raising awareness of the paediatric conditions PANS and PANDAS
Dr Sarah Myhill @MyhillNews
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Hope @hopestardust20
2K Followers 3K Following Raising awareness of Pans Pandas - brain inflammation triggered by a Virus or infection. B12 deficiency
Michael R Scoma MD @DrMichaelScoma
8K Followers 98 Following Infectious Disease Immunology physician specializing in complex chronic diseases. Views are my own; no medical advice given.
Dr. Phillip Alvelda @alvelda
4K Followers 858 Following NASA I DARPA | MIT AI Lab | Venture Capital | Biosecurity | Media (founded Brainworks, Infinite Entertainment, Medio Labs, MobiTV, WiseTeachers & MicroDisplay)
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546 Followers 91 Following Our goal is to provide outstanding clinical care to patients with ME/CFS & related disorders and improve our understanding of these illnesses through research.
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Selin Lab @SelinLab
108 Followers 22 Following We study immune dysregulation in ME/CFS, Long Covid, and infection-associated chronic illness. Opinions are our own.
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2K Followers 972 Following A rogue neuroscientist fighting for medicine based on science; not bias.⚡️POTS, yet taking a stand against patient abuse since 2020.⚡️ I like solving puzzles.
Erin C. Sanders, MSN,... @ErinSandersNP
19K Followers 8K Following Mama & Wife | #Disabled ♿️ | #WomxnsHealth Nurse Practitioner & Clinical Scientist | Prev MIT/Stanford | Connector | Healing in my Garden | #JusticeAccomplice
maude @sheisartmoney
43K Followers 24K Following abstract painter • collage artist Be-bop • Dada • Pyramids • Fela #TransRights #LongCovidRuins
Scott Daniska @scott_scientist
3K Followers 539 Following Former ME/CFS researcher and current patient advocating for how environmental factors are driving these Complex Chronic Illnesses
Brain Inflammation Co... @BrainInflCollab
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