Share this page!

Eliza Charley Profile picture
Twitter logo
Oct 11 • 4 tweets • 6 min read
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…
Huge thank you to everyone involved, for sharing their stories, their research, their pain and their truth. Brilliant writing from @PatrickFreyne1.

Thank you @RoisinKeogh4 @Anonetal123 @b_m_hughes @dbkell @TomKindlon @IrishMECFSAssoc @MEAdvocatesIre - & many others, please tag!

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Eliza Charley

Eliza Charley Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

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
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

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!

Send Email!

Email the whole thread instead of just a link!

Separate emails with commas

:(