Eliza Charley Profile picture
Feb 9 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/
Here’s one example, the late Dr Don Lewis in Melbourne treated #MECFS (especially gut microbiome aspect).

Environmentally, His building was purposely set up for the needs of patients (imagine!): big wide couches to lay flat in waiting room, low/no lights, quiet / low stimuli 3/
Education & culture - the reality of the disease seemed well-understood & believed by all staff I encountered including admin & nurses, anyone drawing blood etc. (no false hope, psych comments, or pseudo compassion; just good old science & kindness). 4/
Access: Although the doc wait list was about 6 months (& I never saw Dr L in the end), I was still able to access their testing regime quickly for assessment with a very knowledge nurse. The test insights changed my management & treatment in a way which helped me at the time. 5/
In sum, having a physically-appropriate environment
+ an entire staff educated in the reality & needs of the disease
+ having a (truly) research-based testing & treatment pathway
+ allowing access to testing even while books were full,
had a direct impact on my health outcomes.6/
When I had sudden & significant relapse of #MECFS in 2020, this clinic was my first call. Sadly, I learned the great doctor had passed away and his work had not been continued. The clinic was closed. This gem was gone. 7/

me-pedia.org/wiki/Donald_Le…
The clinic & treatment may well have had its faults, I honestly don’t know, and can only speak to my own experiences there in this instance.

But I ponder it as an example of the sorts of things that matter for treating people well, with ME, Long Covid, & similar diseases. 8/
As I re-engage with advocacy efforts for this year - esp in Australia (where the above story is an exception; sadly harm is the norm) - I’d love to hear from you: 💙
What matters for good clinics for ME, LC & similar diseases?
Do you have examples of this being attempted well? 9/
Overall, my main message for “better treatment” is that it must be Accessible, Adequate and Appropriate.
And, The need is urgent.

Many people are working in different ways to advocate for better. I hope that further steps will have been taken by the end of the year. 10/10

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More from @ElizaCharley

Oct 27, 2022
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...
Read 10 tweets
Oct 11, 2022
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
Oct 11, 2022
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
Aug 27, 2022
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
Jun 2, 2022
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
May 25, 2022
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

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