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Oct 29 • 3 tweets • 3 min read
I don’t understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, aren’t immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
Adding summary from your suggestions:

- Further common co-morbidities:e.g. MCAS

- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne

- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis

Adding: #MESpine #CCI etc too
Adding the importance of testing and screening for common dysautonomic, neuro-endocrine and autoimmune diseases, including this excellent list here from @Dysautonomia:
#TreatME #TreatLongCovid #LongCovid

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More from @ElizaCharley

Eliza Charley Profile picture
Oct 27
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
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

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