Eliza Charley | Actress on Pause
@ElizaCharley
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🎥 ✨Australian Actress in Italy. Care about #mecfs #longcovid #climate #dv #auspol 🎭co-founder Mi Casa Theatre 📚Words in SoulTread & RoutledgePress She/her
Florence, Tuscany
Joined December 2011
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Pinned Tweet
Running up that hill… to ask
@iamjohnoliver
and
@jonstewart
to cover the
#GreatestMEdicalScandal
! 🏅 🏃
#Olympics
#JohnVsJonVsME
@LastWeekTonight
@TheDailyShow
@weeklyshowpod
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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?
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3K
One good thing to come from friends losing their jobs due to lack of support for Arts/casuals/disability- many of us had to move home with our parents… Who live in Kooyong.
#VoteJoshOut
☺️
#ClimateEmergency
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When they say “I didn’t realise you were that sick”, I might say “No…. you didn’t *believe* I was that sick. I told you very clearly how serious and debilitating this was.”
#MECFS
#ChronicDisease
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2K
All over Instagram I’m seeing
#LongCovid
“rehab” posts, like “I’m working so hard at the program. Strength training, increasing my steps, socialising more - get the weirdest fatigue afterwards.. I can’t get off the couch, my legs feel like lead, but I’ll keep trying”. 😭💔 NOT OK
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Of all the ways to respond to a pandemic, I never dreamed the most common would be “not responding”
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1K
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
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Australia: “MECFS is a poorly understood condition..”
ME Researchers: oh, here’s almost 10,000 biomedical papers, let’s read-
Aus: “no way to know or test.”
ME Researchers: viral reactivation, neuroinflammation, endothelial damage, mitochondrial-“
Aus: “it’s probably anxiety”
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Y’all masking?
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If I have ONE plea for future funding allocations for Long Covid it’s this:
Urgently recognise this is not a lack of health, but rather it is the presence of disease.
Research & treat the disease.
Learn from existing viral-onset disease research such as MECFS & Long Ebola💙6/6
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Good news - I will travel to Mulheim this month for testing with
#teamclots
as an ME patient🩸 Feeling vulnerable to share these details publicly, but I hope my story can add another thread to the tapestry tale we are weaving together.
#MECFS
#LongCovid
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2 years ago, my health was rapidly deteriorating post-surgery, I went to my GP to discuss key treatments that helped me with
#MECFS
earlier in life. She laughed me out of her office.
Doctors don’t just offer nothing for this disease, they actively block our attempts to improve.
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ME patient Results: 3 out of 3 biomarkers tested - 🩸 microclots, endothelial damage and platelet markers all abnormal. Treatment can begin straight away. 1/n
🚗 We’ve made it to Mulheim (an der Ruhr), Germany from Italy. PEM & planned recovery today,
#Teamclots
appointments begin tomorrow. Do you want to hear more about how this goes? 🩸
#pwME
1/3
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What’s the wildest treatment you’ve been offered so far for
#LongCovid
or
#MECFS
? 😂
- a Twitter user once told me to spray my armpits with lemon juice (& got really offended when I didn’t listen) 🍋
- a health practitioner told me to wear more feminine flowery dresses 👗
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You’re allowed to care about
#LongCovid
if you don’t have it ✨
You’re allowed to advocate for better systems even if you don’t feel impacted (yet) 🤗
You’re allowed to donate, organise & stand alongside patients 💙
You’re allowed to dream of a better, safer, gentler world 🙏
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I was too sick to go to the doctor today. I’m okay. This isn’t strange. It happens. I’m sharing because it’s a common part of life with chronic disease and it’s important our clinicians (& friends, & families, & workplaces) recognise they only see us on our best days. 🎢
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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
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I will never understand how a person can run a Long Covid clinic & call themselves an ‘expert’ in chronic viral disease without:
-reading a single paper on MECFS
-keeping up to date on LC research
-connecting with LC & ME charities & communities
What the heck are they doing?
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When bedridden in my early 20s with severe ME - my hope was to one day be well enough to study part-time, work, run, see my friends, enjoy life.
This severe relapse in my 30s is different: One goal. Well enough to fight. Fight for patients. Fight for research. Fight for better.
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Continues to be totally wild that we’re facing a growing worldwide ME/CFS crisis - and most people have never heard of it, or what they know is wrong.
#MedTwitter
#LongCovid
#MyalgicEncephalomyelitis
#MECFS
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🚗 We’ve made it to Mulheim (an der Ruhr), Germany from Italy. PEM & planned recovery today,
#Teamclots
appointments begin tomorrow. Do you want to hear more about how this goes? 🩸
#pwME
1/3
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3. Exercise: I completed a specialised GET program w professional exercise scientists & CBT at a fatigue clinic.
Like most* MECFS patients, it made me worse in the longterm. (*89% in one 2015 survey)
Disease in remission? I exercise fine.
Disease relapse? It’s like poison. 4/6
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✅ Things that helped my viral-onset
#MyalgicEncephalomyelitis
@ Long Covid research clinic overseas:
plasmapheresis, Anticoag TT, testing & treating co-morbidities + more
❌ Things that harmed me in Australia: Graded Exercise Therapy, CBT, medical abuse, gaslighting & neglect
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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
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It is beyond reprehensible that
#MECFS
patients have been left without care for decades, AND attempts to adapt (like using a shower stool, wheelchair) have been derided. I am begging doctors: Don’t give into your fears that helping a patient adapt will somehow make them worse.
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Hi 👋 I’ve been quieter the past few weeks while arriving home from intensive months of testing & treatment for
#MECFS
in Germany (& consults in Spain). Hope to write a longer update soon. I’m continuing to improve slowly week by week. Cautiously optimistic. Speak soon 😘 Eliza
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Hey media? Long Covid is not a niche story topic. Worldwide mass disabling event needs your attention. Have you:
*Set up reporting teams to cover LC with breadth & depth?
*Established relationships w patient groups for comment?
*Read up on
#MECFS
&history of viral-onset disease?
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Here’s to Nattokinase helping me say “FU” to this disease.
Thousands of FUs.
Every day.
#teamclots
#pwME
#microclots
#chronicillness
#TreatME
#pandemic
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Covid causes ME in a substantial number of people. It is a known impact & it is devastating. And yet, it is rarely mentioned as a specific outcome of the pandemic.
#MECFS
#MEpandemic
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The medical gaslighting of ME & LC prevails not because there’s no biomedical evidence for the disease (there’s plenty), but because the bio-psycho-social story fits our existing biases against the sick, elderly, & disabled. To truly advance we must unpick the harmful narrative.
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As a person with MECFS since 2009 in relapsing-remitting form — Please stop wasting research funds on Graded Exercise
Being able to exercise / increase exercise is a CONSEQUENCE of baseline improvement, not a treatment driver.
When we can. We do.
Treat the underlying disease.
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4. Wellness -I practice meditation &prayer, I like yoga, I find strength in my spiritual faith. I drink water, seek the sun & love nutrition
✅ done these in remission years,
✅ done these in relapse years.
The disease MECFS has come, gone & returned regardless; separately
5/6
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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
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My biggest challenge with
#pacing
for
#PostExertionalMalaise
is not: “Can I do this now?”
But rather: “Can I do this now & then again in 2 days time?”
If the answer to the 2nd question is “No”, then chances are the answer to the 1st question is also “No”.
#MEAwareness
#MECFS
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“Every cigarette is doing you damage” - that’s the ominous voice anti smoking message etched in memory from repeated ads in 1990’s Australia.
Guess what? It is possible that “Every Covid infection is doing you damage”. But public health warnings? Zip. Nada. Zilch.
#CovidAus
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This script is getting so old. Can we please urgently inform medics in Australia?
Doc: “it’s just so hard to diagnose MECFS”
Me: “which diagnostic criteria are you using? ICC, CCC, something older?”
Doc: “huh? oh, no, well, you know it’s more like just when a patient is tired”
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Bravo Italo trains in Italy 👏 Developed an air filtration system with a research institute in Milan
✅ HEPA
✅ 3 minute air exchange
✅ planning of air flow
May 2024 be the year businesses decide to take action on clean air for all.
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Countless numbers of Australians now have
#MyalgicEncephalomyelitis
after Covid infections —- literally “countless”, no one is counting?
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🩸Update: My
#MECFS
blood has microclots and platelet activation. Tested in Mulheim, Germany with the brilliant team. I have started triple therapy (pharmaceuticals) and H.E.L.P. Apheresis. “Like a black hole vs the Milky Way” to quote my bro-in-law 🌌
#Teamclots
#pwME
1/3
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If your clinic:
- doesn’t know what PEM is
- can’t explain it thoroughly,
- isn’t looking for it
- doesn’t inform you about the possible consequences, including possible irreversible injury
Then you cannot give informed consent to graded activity/exercise.
#LongCovid
#LCinquiry
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Can you image having a drug on the shelf that worsened the condition of 89% of a specific patient population…. And your health authorities not pulling that drug from the shelf? Harmful GET is still endorsed in Australia. It is actively prescribed as a non-drug intervention.
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The thing they don’t realise when they see me stand against GET & CBT as treatments for ME & Long Covid is this: ▶️ my lived experience is 12+ years with the disease AND I bought into these treatments. I “believed”. I signed up, paid up, joined the cult & drank the Kool Aid. 1/2
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We must remember: We rarely hear the stories of the sickest patients.
#VerySevereME
#MEawareness
#TreatME
1/
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If someone has hypoxia & a hypercoagulable state, and you force them to work on their fitness - without treating the underlying disease - does this constitute medical abuse?
Follow up q, is it similar to telling a diabetic to slowly increase their sugar intake - without insulin?
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Every
#MECFS
advocate I know is exhausted or in a crash right now 🤒 The energy cost is enormous, fighting for:
- your own treatment to survive
- system change for better treatment for all
- precautions so the whole world doesn’t get this
Able-bodies need to *STEP UP*
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Arguably, Two of the most hopeful & scientifically-relevant conferences are happening this week on
#LongCovid
&
#MECFS
(with implications for the health of 100’s of millions of people): the LCPForum & the ME Working Group symposium -
Will we see media coverage?
#pwME
#pwLC
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Would you volunteer for a Graded Exercise Therapy study if you were told upfront it was:
- unregulated & highly criticised
- w/o mechanism to report harm
- based on debunked data (taught as examples of pseudoscience!)
- w/o post-study care for injury or disease progression?
#pwLC
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@1goodtern
While this is an edit by advocates (the original was just Mr. Cosy-Man smiling with his soup without a care in the world despite being positive again)… it’s good to see the edit circulating! It has more accurate information!
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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
@ElizaCharley
Sjogren’s, Celiac, Hashimotos, RA, lupus and antiphospholipid syndrome - the most common autoimmune diseases seen in POTS and EDS patients. Treat the underlying autoimmunity and the POTS and related conditions often improve.
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Very good news! “The grant combines
@Stanford
immunologist Mark Davis’s work on T-cells with Ron Davis’s work on HLA genes.” Multi-year, multi-million dollar funding from
@NIH
for
#MyalgicEncephalomyelitis
#pwME
#MECFS
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MEDICINE. Medicines e.g. research-based pharmaceuticals, & medical interventions e.g. blood apheresis, are what made the biggest differences. (AND more research is needed)
Exercise & movement are a natural consequence of improved baseline.
Stop prescribing exercise to
#pwME
2/2
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I really appreciated Amy Proal’s talk tying together so many connections:
viral persistence, clotting abnormalities, endothelial dysfunction, brain stem inflammation, vagus nerve infection & signalling, & mast cells
Complex not Mysterious!
#UniteToFight2024
@microbeminded2
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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
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It is hard living with the most-hated disease in medicine. It really is. We don’t only encounter neglect, mistreatment & stigma, we legitimately encounter hatred from the very people designated to help us.
#MECFS
#MEAwareness
@richardvallee
I gave a professional lecture to a group of physicians on LC & towards the end talked a but about
#MECFS
& they practically bit my head off. Their defensiveness was utterly palpable and I’ve never been treated so unprofessionally in my life. The physician community has “issues.”
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🥁 🥁 🥁It’s time! Which Jo(h)n will you bet on to cover the
#GreatestMEdicalScandal
?
Cast your vote now!
#JohnVsJonVsME
Will it be
@iamjohnoliver
or
@jonstewart
?
Add your favorite memes to QTs & Comments highlighting your vote!
More info below! ⬇️
meme by
@emilyesfraser
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In the future they will say “We didn’t know back then” and “We did the best we could at the time” — and we’ll say:
“But we did know” and “You could’ve done so much more if you weren’t busy ignoring our suffering.”
#MECFS
This thread by
@Be_Kinderr
is 🔥
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Please sign.
#VerySevereME
is a devastating disease. It can kill. And it requires special care.
Too often in the UK, appropriate & substantial care is denied. It’s happening again right now.
Demand this
@NHSuk
trust do better.
Please sign.
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Australia, we need to talk — A brief critique of the
@NSWHealth
clinical practice guide, which dropped this week for
#PASC
#LongCovid
: 🧵 1/n
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Meet David 👋 He’s cared for me with compassion, skill, intelligence, and kindness. Advocacy I do for
#MyalgicEncephalomyelitis
is possible because of his constant behind-the-scenes work. Some years he was my 24/7 carer. Gave up career & more to help me survive & keep fighting 1/
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There is a strong belief with Australian health practitioners that even *mentioning* a diagnosis can magically *cause* a disease.
Now, they’ve put it in writing to the government about
#LongCovid
!! It’s embarrassing as a nation, it’s incorrect and extremely harmful.
#StopTheHarm
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💙Thank you for your comments & sharing. I see you. I believe you. I stand with you. I’m so sorry for what you are facing. Right now I’m resting after a medical appointment - I plan to come back online and reply to as many comments as I can when I’m next able. Go gently friends x
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Questions I’m trying to use (gently) more often as a person with M.E.:
• Do you think that’s true?
• What if you’re wrong?
• Can you walk me through how you came to that conclusion?
• If things don’t change, what’s the plan?
• Since we last spoke, what have you learned? 1/2
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Hi. I have viral-onset ME. I’ve had ‘better’ years & worse years since 2009. I’ve experienced:
• Graded Exercise (fixed increments)
• Graded exercise (personalised)
• Exercise (no grading)
• Movement, no exercise
• No movement, No exercise.
Guess what helped the most? 1/2
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Let me get this straight… 2015 IOM report on MECFS created new diagnostic criteria emphasising the must-have inclusion of PEM…. This report led to the funding of the NIH intramural study… which promptly did *not* have PEM as inclusion criteria?
Is this right
@sunsopeningband
?
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Now trending in Entertainment 👀
@WhatsTrending
— It’s been called “the greatest medical scandal of the 21st century” (
@GeorgeMonbiot
). Now, the race is on for who will cover it first!
@iamjohnoliver
@LastWeekTonight
or
@jonstewart
@TheDailyShow
It’s
#JohnVsJonVsME
!
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“You’re not sick… You’re just dealing with the difficulties of just being a human.” ~ Dr Wallit on Fibromyalgia.
Imagine handing this person government funds to study diseases he… *checks notes*… doesn’t apparently believe are diseases?
#NIHIntramuralStudy
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Ok. So this shouldn’t need saying. But.
LDN for
#LongCovid
it is NOT the same as suggesting someone inject their veins with Pine-O-Cleen disinfectant!
Low-Dose Naltrexone is a researched substance, a prescribed pharmaceutical used for a number of diseases including ME and MS.
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Just found out an extended family member (an Australian doctor) is discussing my health without my permission - They “believe” ME is deconditioning & depression.
I confronted them last year & they said they’d continue to prescribe exercise to patients.
💔
#MECFS
#LongCovid
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I don’t know many patients who haven’t at least considered the role mind practices alongside biomedical approaches to their disease 🧠
But I do see many physicians refusing to look at the biomedical side, while clinging to mind-only approaches 💭
#MECFS
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@JaneCaro
@vanOnselenP
As an immunocompromised person during a pandemic, it is perfectly reasonable to expect mask-wearing and careful discussion of vulnerability during a pandemic.
What is not reasonable (although expected) is online bullying of vulnerable people during a pandemic.
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I’m just a girl (with over a decade living with post-viral complications),
standing in front of political & healthcare leaders,
Begging you to stop thinking this can all be fixed by exercise & ‘lifestyle’.
#PostExertionalMalaise
#MEAwarenessMonth
#GETcanGETintheBin
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Risk assessment is not only “how likely” something is, but also “how severe” it will be if it does happen.
#LongCovid
#LCME
#MECFS
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@weeklyshowpod
Hi
@weeklyshowpod
Have you seen the tag
#JohnVsJonVsME
?
There’s a race on wanting to see you cover the “
#GreatestMEdicalScandal
”
We got sick. We didn’t recover.
Then the medical & insurance systems did everything they could … to run away!
Misogyny, misinformation & more
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Visiting friends & family back home in Australia, more & more are experiencing new onset chronic health issues now that Aus is a couple of years into widespread & repeat infections 1/
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Trying to choose between John Oliver and Jon Stewart to cover the
#GreatestMEdicalScandal
! … Why don’t we have BOTH?!
#JohnVsJonVsME
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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?
#GreatestMEdicalScandal
#MEawareness
#pwME
1/
The responses are absolutely shocking. So incredibly ignorant, rude and biased. The sad part it isn't entirely their fault because they're not being taught what ME is, yet it is so extremely harmful. Real question is: why on earth aren't they more curious how to improve care?
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To the amazing doctors & researchers who ARE fighting hard to help us with
#MyalgicEncephalomyelitis
- Was there an “aha!” moment when you realised the industrial scale of the neglect of ME? Any key examples?
#GreatestMEdicalScandal
(Let’s show grace as we hear their insights🙏)
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READ THIS 💡 Brilliant piece on Myalgic Encephalomyelitis by
@PatrickFreyne1
in
@IrishTimes
today.
1/2
#LongCovid
#pwME
#pwLC
#ChronicDisease
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Health agencies always asking us to “prove” our stories of being harmed by Graded Exercise Therapy… How about they *prove* it’s *safe*? That would mean reading about the physiological abnormalities of this disease, which’d immediately rule out GET for this disease.
#pwME
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✍️ The parliamentary inquiry into
#LongCovidAus
has begun.
🧵 Really want to do a thread to discuss, but not well enough right now.
🏥 I read the first presentation though - details from a
#LongCovid
clinic.
As suspected? GET, CBT & prejudice is rife.
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If you can’t give a research-backed definition of PEM, you should not be allowed to run a “fatigue” clinic in Australia.
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If you get
#MECFS
in Australia, there’s:
❌no approved pathway for care
❌no speciality to manage your case
❌no immediate referral for diagnosis, assessment, or establishing a treatment plan
You can fight for some help. But it’s rare, expensive, & not accessible to most. 1/2
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I didn’t understand my own story and that kept me quiet 🤫 A permanently gaslit state.
We must empower patients with language to name symptoms or spot patterns, and we must create safe spaces for them to seek help and ask questions without belittling and gaslighting. 8/n
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@alexmeshkin
This is fascinating - using entertainment client as a proxy for test positivity rate due to regular and whole-of-company testing? If I’m understanding that alright then that’s such a good idea and useful insight, thank you for sharing
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There aren’t really any downsides to funding Long Covid research.
You can’t overfund it.
You can’t fund it too soon.
The approach of “wait & see” and “drips & drabs” has no strategic benefit
The opposite approach of urgent & abundant action has no down side & many benefits.
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You know what else is ‘cyclical’? My period🩸.
Something being cyclical doesn’t necessarily make it ‘psychophysiological’.
Also timing of PEM crashes is linked to exertion, not cycles, anyway.
Yes this is a subtweet
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I’m getting braver at sharing my story (and feel a bit nervous sharing this one!) - for this
#WorldMEday
,
@Talmandaniel
held safe space for me to talk about the harm inflicted on me from GET, CBT, and brain-retraining.
These practices for MECFS must stop.
#GlobalVoiceForME
This
#WorldMEDay
we have a new episode of the podcast out! Check out Daniel's conversation with
@ElizaCharley
. Eliza tells her story & we spend time talking about the dangers of psychologisation. By coincidence it's exactly a year since we released our first episode! 🎉 Link 👇
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Real quotes on the record from Royal Melbourne “Post-Covid” Clinic:
“we’ve learnt not to over-investigate”
“THERE IS NO PATHOPHYSIOLOGY”
“patients are just paralysed with hypervigilance”
“roadblocks to getting better… (are) anxiety & frustration”
#AusPol
#LongCovid
#MECFS
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🏥 Seeking a multidisciplinary clinic in Australia for Long Covid & ME that treats the actual disease, not simply trying to “rehab” behaviour and belief.
This is not too much to ask.
#pwME
#LongCovidAus
#MECFS
#MedTwitter
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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
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Feeling cautious. As many fellow
#pwME
will know, any test can make you nervous. (1) Not because you think they’ll find something, because of what happens if they don’t. (2) Because of over a decade of being yelled/laughed at & sent home with no hope 3/3
#MyalgicEncephalomyelitis
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@LLMN80
Fair question. In the past for ME, a distinct belief was created that says ‘if patients talk to each other about their symptoms, the symptoms will get worse.’ This is a false narrative & the impact was patients were isolated & kept in the dark about their own disease 1/2
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As we fight for better treatment of people with ME, we must advocate to change the system that allowed for such harm to take place unchecked for so long - 1/2
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@bmj_latest
@madlendavies
If a treatment looks extreme, let’s consider also how much the suffering is extreme 🙏
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