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Oct 27 • 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.

They will write a report. 2/ 🧵

aph.gov.au/Parliamentary_…
I’m told Australians and international individuals & organisations are encouraged to share 📄 written, ☎️ audio or 📱 video submissions about one or more “Terms of Reference”:

Point 6 seeks to understand “Best Practice” including internationally

3/🧵

aph.gov.au/Parliamentary_… Terms of references for the...
**Submissions close November 18th**
The awesome @MsAmyLewis created this form to make it even easier to share your experience in #LongCovid and Repeat Infections:

Best practice advice could come from orgs, researchers, clinicians or individuals. 4/ 🧵

cleanerair.squarespace.com
Are you able to complete or share the above form & help the Australian Parliament understand Best Practice for #LongCovid?

@PutrinoLab @LongCOVIDPhysio @organichemusic @LongCovidKids @itsbodypolitic #TeamClots @dbkell @loscharlos @fi_lowenstein @ahandvanish 5/ 🧵
For context, here is one example of what we’re up against in Australia at #LongCovid clinics: (& why you’re expertise on Best Practice is sorely needed!)

#LongCovidAus #pwLC #pwME
6/🧵
Your story matters. The experience of neglect & mistreatment of people with #LongCovid in Australia is harrowing, and it reflects the experience of people with #MECFS. We can do better. We know enough to do better. We must do better. Together let’s #StopTheHarm.

7/ 7
Who would you like to see send their information & experience on best-practice for #LongCovid to the Australian Gov to help #StopTheHarm?

cc @doctorasadkhan @resiapretorius @exceedhergrasp1 @BinitaKane @RoisinKeogh4 @microbeminded2 @DrAnnaNZ #Teamclots @polybioRF @OpenMedF
(Done my best to summarise this opportunity, if there are any corrections to be made please let me know @SMpwrgr @MsAmyLewis @hausofhemlock.)
Seeking expertise:
@TraceySpicer @r_prior @loscharlos @morganstephensa @jesskatedavis @davidtuller1 @keithgeraghty @ProfPCDoherty @NataliaHodgins @alice__rumble @dr_kevinlee @MEAdvNetAu @MEActNet @PSPforMECFS @PlzSolveCFS @JanetDafoe @Sunny_Rae1 @PhysiosForME @LongCovidOT

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More from @ElizaCharley

Eliza Charley Profile picture
Oct 11
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/ 🧵

#MECFS #StopTheHarm #LongCovidAus

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/
Today let’s look at the HANDI guide - a set of non-pharmacological interventions pby the Royal Australian College of General Practitioners.
It’s a great resource & doctors refer to it for “evidence-based” guidance…

> The only entry for ME/CFS is on Graded Exercise Therapy… 3/
Read 17 tweets
Eliza Charley Profile picture
Oct 11
READ THIS 💡 Brilliant piece on Myalgic Encephalomyelitis by @PatrickFreyne1 in @IrishTimes today.
1/2
 irishtimes.com/health/your-we…

#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
Cc @Mon4Kooyong @Mark_Butler_MP @brookmanknight @RACGP @normanswan @sophiescott2 @TraceySpicer
This is definitely an important news article to read about #MECFS - whether you’re an ally, a politician, a healthcare agency, a family member. Read this:

irishtimes.com/health/your-we…
Read 4 tweets
Eliza Charley Profile picture
Aug 27
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 In a messy bedroom Eliza lays on her back in bed with her kn
In 2008, I worked full time in retail and was looking to begin acting classes. I lived an active life full of social, creative, sporting and spiritual activities that brought me joy and meaning. 3/n

📷: Ocean Kayaking in July 2008 Photo of Eliza in a yellow Kayak on the ocean. She wears a p
Read 46 tweets
Eliza Charley Profile picture
Jun 2
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/
The @NSWHealth #LongCovid clinical guide matters because healthcare workers in australia will use this for advice on *what to do & what not to do.*
What they say directly impacts whether we *harm or help* thousands upon thousands of real people facing real hardship right now 3/
Read 24 tweets
Eliza Charley Profile picture
May 25
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
I have benefited greatly from brave patients sharing their stories online, and from clinicians & researchers banding together with patients online. 3/n
Read 8 tweets
Eliza Charley Profile picture
Apr 3
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.

Infection has, every time. 2/6
2. Weightloss - I can’t believe this is being studied in relation to Long Covid, but here we are.

My weight has fluctuated over the years up and down within an approx range of 25 kgs (55 pounds).

At no point has it correlated with disease onset, relapse or severity. 3/6
Read 8 tweets

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