Milestone alert 🚨 the #ChronicIllness #PatientAdvocacy project has hit 1000 participants! Thank you all for chronicling 162 illnesses, snapshot below where text size = number of responses. Sneak peek of what your responses are showing us, a 🧵… 1/ #InvisibleIllness #NEISvoid

Come talk sex bias in autoimmune disease at my #ozsinglecell22 poster!

✨That's a wrap, folks✨ Thanks so much to all you legends that participated in our #PatientAdvocacy project 💙 It's been a year long journey of hearing your diagnostic journeys & I'm proud you chose to tell them to us. Thank you. Now, to the code lair! I mean... #DataAnalysis!

One more day! One more day! Help us chronicle #ChronicIllness diagnostic journeys & help show how the #Australian medical system is addressing #spoonies needs! This includes you healthy lot, we need you too! #DisabilityTwitter #ChronicallyIll #InvisibleIllness #PatientAdvocacy

Opportunity to help get the word out there about how misdiagnosed and under-diagnosed your chronic condition is in Australia!🎉 Add your voice in this 20-minute survey ⬇️ https://t.co/VgNc8yHOKi #hEDS #EDS #POTS #pwME #MECFS

Thank you @GND_crew for your work in such an important area, and well done for getting over 1000 responses so far! https://t.co/bbleejxXhU

We are SO CLOSE to 2000 submissions! 3 days to go, help us make it? #spoonies (any #ChronicIllness) & healthy controls welcome 🌻 You would make this tired, #ChronicallyIll researcher's little heart so happy ❤️ #DisabilityTwitter #PatientAdvocacy #InvisibleIllness #NEISvoid

Make a #ChronicallyIll researcher's YEAR & get on it! Pretty please? Any #ChronicIllness & healthy controls welcome 💋 SO close to 2000 submissions! It would make me so happy ✨ https://t.co/94zehlnJhc #DisabledInSTEM #spoonie #SpoonieChat #DisabilityTwitter #InvisibleIllness

Help us chronicle #DiagnosticJourneys for #ChronicIllness! The #PatientAdvocacy project closes 30th June - Healthy control or #spoonie, pls add your voice & thanks to 1500 participants on 160+ illnesses so far. We hope we can help make a change, with you https://t.co/lrvS1uLSza

🚨7 DAYS TO GO🚨 Care about #ChronicIllness? Help us quantify diagnostic journeys & impact medical care in #Australia - #spoonies & healthy controls, we need you! 👇 https://t.co/lrvS1uuPxa #DisabilityTwitter #InvisibleIllness #Autoimmunity

I’m so thrilled about the local Aussie research that is underway at The Garvan Institute. My pal, Anna is a lead researcher and a fellow spoonie living with complex chronic illness. She’s the real deal and is trying to help us get answers and effective treatments!! #pwME #NDIS

In 28 days our #PatientAdvocacy project closes! Your stories can help us show quantitative traits in the #Australian medical system: good, bad, areas that need change. #healthy or #spoonie, pls take 20 min to help ✨ #NEISvoid #InvisibleIllness @ChronicFullSick #DisabilityTwitter

PLEASE SHARE. This is the medical research we need. By chronically ill people, for chronically ill people!!! Please take the survey. ✨ https://t.co/b7p76jGUrn #Disability #NEISvoid #spoonie #ChronicPain #Fibromyalgia #MECFS #pwME #LongCovid #ableism #NDIS #CovidIsNotOver

Help us chronicle #DiagnosticJourneys for #ChronicIllness! The #PatientAdvocacy project closes 30th June - Healthy control or #spoonie, pls add your voice & thanks to 1500 participants on 160+ illnesses so far. We hope we can help make a change, with you https://t.co/lrvS1uLSza

A highly successful example of #ConsumerEngagement in the design and implementation of a national education program for #InflammatoryArthritis. Well done to all involved. Poster 58 #ARA22 @NPSMedicineWise

Please support Australians with #MECFS by using this automated, customisable template to email your local Member of Parliament and ask the government to provide funding for GP education, updated clinical guidelines and more research into ME/CFS. https://t.co/W9kppHd9Ag

Australia’s #MECFS clinical guidelines were last updated 20 years ago & urgently need updating because they recommend discredited treatments like exercise & CBT, which are no longer recommended in the US or UK. In 2019 @NHMRC agreed to #UpdateMECFSguidelines. We're still waiting.

It can be impossible for bedbound and housebound #MECFS patients to see a doctor - yet our most vulnerable people live without access to health care or medication because they can't meet the #telehealth requirement to see a GP in person once in the previous 12 months. #disability

Thanks to @SolveME, we received a #RamsayGrant to investigate the sex difference in #MECFS with the @YouMeRegistry data & immune landscapes of patients with the @EmergeAus biobank. 10/