🎥 ✨Australian Actress in Italy. Care about #mecfs #longcovid #climate #dv #auspol 🎭co-founder Mi Casa Theatre 📚Words in SoulTread & RoutledgePress She/her
Jul 25 • 7 tweets • 3 min read
A good time to Re-highlight this study from 2022: “Doctors’ attitudes toward specific medical conditions” #MECFS
👀 Guess which disease had the most judgemental language use by healthcare professionals in online forums?
Introducing the 2024 *updated* entry for #MECFS in Australia’s
@RACGP guide for General Practitioners: 👀 let’s review the changes 1/ 🧵
[TW: graded exercise therapy GET,
CBT, the PACE trial]
@racgp changed the title from:
“Graded Exercise Therapy”
to
“Incremental Physical Activity for chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME)
📚 Notwithstanding their thesaurus skills… in effect of definition & application, not much else has changed
#MECFS
2/
Jan 21 • 9 tweets • 2 min read
It’s been a heartbreaking week with @BBCDragonsDen shamelessly platforming unproven “ear seeds” as a treatment for the debilitating disease MECFS. 1/ 🧵
#DragonsDen #DangerousDen @StevenBartlett #DiaryOfACEO
As expected - because unconscionable acts like this are not unprecedented - there has been negative impacts on the patient community already 2/🧵
#DragonsDen @BBCDragonsDen
Feb 9, 2023 • 10 tweets • 4 min read
What are some examples of best practice (or at least trying) to diagnose, support & treat #LongCovid and #pwME? 1/
We hear the horror stories - because this, unfortunately, is standard in many if not all countries. And we must (must) call out mistreatment & barriers to care.
But please tell me, what are some times things went well? Needs met? Easy access? Treated well? #MECFS#pwME#pwLC 2/
Oct 27, 2022 • 10 tweets • 15 min read
International friends with #LongCovid and/or #MECFS, international researchers, orgs & clinicians - you are allowed to submit your thoughts & experience to the Australian Parliamentary Inquiry into LC. You can help shape the future of treatment & care Australians #pwLC: ➡️ 1/🧵
What does this mean? The government in Australia has formed a committee - members of parliament, including several medical doctor MPs - to hear people’s stories of Long Covid AND experiences of Repeat SARS2 infections.
It’s cute that the HANDI guide by @RACGP prides themselves on claiming they’re “evidence-based” 😂😂 When they still only have one entry for #MECFS and it’s “Graded Exercise Therapy” . 👀 Let’s dive in shall we? 1/ 🧵
racgp.org.au/clinical-resou…
First up, this is not targeted at any individual. The (mis)treatment of ME patients in Australia is systemic and institutional - spanning education to guidelines, welfare & insurance.
That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/
#LongCovid#pwME#pwLC#ChronicDisease
This article’s jam-packed with lived experienced & researcher interviews - you’ll get a full summation of: What is ME? how does Severe ME affect life? Where & why did the treatment of ME go so wrong? And What’s being done today (from research to guidelines) to change that! 🙌 2/2
Aug 27, 2022 • 46 tweets • 19 min read
News from Germany 🩸: Why coffee and cake? Because finally I can 🎉
3 months into treatment for #MECFS microclots, I’m opening up on this piece of the puzzle for me: 🧵 1/n #TeamClots#PostViral#MyalgicEncephalomyelitis
This was me in April this year. 18 months into significant relapse following a tonsillectomy and chronic infections. #pwME 2/n
Jun 2, 2022 • 24 tweets • 11 min read
Australia, we need to talk — A brief critique of the @NSWHealth clinical practice guide, which dropped this week for #PASC#LongCovid: 🧵 1/n
This will be a critique from a patient perspective - I have viral-onset (non-Covid) longterm disease, #MyalgicEncephalomyelitis#MECFS - and it will be non-exhaustive because I, myself, am exhausted because of said disease. Let’s go: 2/
May 25, 2022 • 8 tweets • 3 min read
ME patient Results: 3 out of 3 biomarkers tested - 🩸 microclots, endothelial damage and platelet markers all abnormal. Treatment can begin straight away. 1/n
It feels quite vulnerable to share this here so publicly but as many of you know I’ve been on a multi-year journey to be more public with my story and with the vital calls & campaigns for better treatment of ME and Long Covid (especially in Australia). 2/n
Apr 3, 2022 • 8 tweets • 2 min read
Despite best efforts of many brilliant minds, government funding for Long Covid in many countries seems to continually be directed towards studying ‘lifestyle’ & ‘wellness’ factors. — As someone who has had relapsing-remitting MECFS for 12 yrs, I can share a few experiences:🧵1/6
1. Stress - Over many years, I’ve experienced grief for the death of family members, lost suddenly & slowly. I’ve worked stressful jobs. And I’m divorced.
These difficult times have never correlated with my disease onset, relapse, or severity.
