Thread by @ElizaCharley

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 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

Suddenly in 2009, I caught a virus & never fully recovered.

I remember trying to keep my day job & trying to keep up my creative joys (filming a music video in Melbourne here)… but I struggled to stay standing. My life-force was zapped out of me. I was sick round the clock. 4/n

Those first 3 years sick in my early 20’s were the hardest of my life.

Incredibly isolating, constant battles to be believed, constant confusion on “what to try next”.

Medical consults were at best neutral, and more often abusive.

GET left me too disabled to study or work 5/n

I don’t talk a lot about this time, or eventual remission. But when I went through an awful divorce in 2016, I remember telling a friend:

“This is awful, I’m broken, this is horrific. And still, it doesn’t begin to compare with the difficulty of ME.” #MEawarenesshour #pwME 6/n

I never dreamed I would be that sick again. I took short-term contracts & flexible jobs to allow for periods of sickness & crashes. I gave thanks every day that I was better than I used to be and did my best to stitch a life back together.

But, I kept getting sick 7/n

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

By 2019, infections were becoming more frequent. Less “bouncing back” in between.

It affected income&stability. Each month was a new challenge to try & make rent. Once in Dec 2018, I opened up to a family member but was told I just needed to work harder & more hours. #pwME 9/n

This is not a unique story to me. Being told you just need to “ask for help” and then being shut down and told “no” when you do, is common. And so, it was a great relief in 2020 when a surgeon wanted to take out my tonsils to reduce the infections. Action. Help. Treatment. 10/n

It was not a pleasant experience. A story for another day. But, I short, after returning home I woke up at 6am bleeding from the throat. My housemate (amazingly, a doctor!) got me into a position to breathe (between blood spurts) & came with me in the ambulance to emergency 11/n

Over the next few days in hospital, something was wrong.

Pro-clotting medication (😮) was given. IV antibiotics. We could not get the pain under control. I took photos of my throat healing much more slowly than examples I’d seen. POTS was immediately back with a vengeance. 12/n

I’ve been sick every day since (almost 2 years now). I took 2 weeks off for the surgery. I never went back.

Over those first 6 months, I thought I could just ‘manage’ the POTS & use pacing for my activity. I kept walking daily & doing activity when able. I missed PEM clues 13/n

My immune system faced additional challenges over the next 6 months and I worsened with each one.

🎢 The rollercoaster of this disease. In Nov 2021 I was housebound but slow walking for 5minute blocks. By Dec 2021, I had to crawl to even use the toilet. 14/n

What happens next is thanks to Twitter. The fast dissemination of information and patient experiences.

Insights & research that felt relevant to me (unlikely any “offical” advice or guidelines, which persisted in archaic bias and misinformation) 15/n

Perhaps like you, I started seeing mentions of “microclots” in #LongCovid and #ME.

Descriptions of hypoxia & ischaemia read like my own experiences. I searched for the word “oxygen” in my notes app & there it was. Regularly feeling “starved” of air.
16/n

Thus began months of following you all on Twitter. Asking questions. Tracking down the emails of researchers (🙈 thank you for your openness!).

And eventually landing here in Mulheim-an-der-Ruhr, Germany in May 2022 to meet with @BeateJaegerMD. 17/n

At first, I was too sick to travel.

Throughout winter I had trialled protocols to deal with mould, & the Klimas protocol for ME patients who had v injury (I’m in this group) — these shifted the needle and I was making progress. 18/n

Then I had a severe crash. It could have been trying too much activity too soon, it could have been a number of things. But I crashed and it was awful. The worst convulsions I’ve ever had. Back to bedridden. BUT it UNLOCKED TREATMENT. I was given an oxygen tank! 19/n

Supplemental oxygen, for me personally, has been a game changer for PEM in particular. It helped pull me out of that crash, and it helped reduce both the severity & the duration of post-exertional neuroimmune exhaustion. I (usually) sleep better. I still use it every day. 20/n

I’m sorry it’s taken me so long to get the point of #microclots. But everything with this disease is complex, multi-systemic & happens within a context.

So here we are, May 2022, at a #LongCovid & ME clinic. I’ve shared snippets on Instagram along the way
#TeamClots #MECFS
21/n

On the Monday - we tested for #TeamClots & donated blood for to ME research

On the Tuesday - we had confirmed images of my microclots, hyperactivated platelets and endothelial damage.

On the Wednesday - I started my first H.E.L.P. (Heparin-based) Apheresis treatment
22/n

We stayed for a month and I completed 5 Apheresis sessions.

I began “triple therapy” anticoagulation medication, and we reviewed all my medicines.

We tested for viral reactivation (EBV indicated yes. thankfully my old Parvovirus B19 was no, with only old antibodies.) 23/n

We also tested for a range of auto-antibodies with some of my blood being shipped to a different clinic in Germany for testing. My results were a range of “positive”, “at risk” (I understand this to mean ‘borderline’), and some “negative”.

24/n

Each Apheresis session tests your blood immediately before & after treatment - you get a little print-out receipt.

This had some information i wanted, such as venous blood oxygen saturation: Mine was repeatedly low/abnormal (even if finger pulse oximeter borderline/normal) 25/n

To begin, I could not tolerate more than 1 session / week (6-7 days recovery). Things that helped me endure sessions: compression leggings & socks, sensory deprivation to conserve energy (headphones, eyemask), wheelchair transport,& *not* taking POTs meds before (HR too low) 26/n

“Did it help?” Over 3 months, I’ve noticed changes in roughly 3 stages. (With a heck of a lot of “up and down” in between!)

I’ll call them:
1. Internal
2. Housebound
3. Out of the House

#microclots #tripletherapy #MECFS #apheresis #MyalgicEncephalomyelitis #LongCovid #TeamClots

1. INTERNAL CHANGES: The first things to “improve” did *not* seemingly alter my activity level or baseline.

However, I did feel things changing/moving even ‘clearing’ inside my body 😳

My antihistamine dosage was reduced bc seemed to be working better (improved perfusion?) 28/n

1. INTERNAL CHANGES (cont): Then came the WORSENING.Yes, worsening.

Talking to fellow patients I don’t seem to be alone in this. Around weeks 2-3 I had a flu-like worsening. It was ROUGH.

It was like bad PEM but also different somehow. I haven’t found the words for it.

29/n

1. HOUSEBOUND CHANGES: After weathering the worsening, ⬆️ I had an increase of out-of-bed daily activity.

This looked like
- Able to shower more than 1/week
- Easier to get up & walk to the bathroom (still needed walker sometimes)
- More cognitive time (talking & thinking) 30/n

After a month we returned home (I’m Australian but we live in Florence, Italy).

The multi-day drive home via Switzerland was more bearable than the drive up - This seemed at the time to feel like a direct consequence of the treatment.

Easier to sit up in wheelchair too.

31/n

2. HOUSEBOUND changes: Well, look, is it any big surprise I crashed when I got home?

A ‘perfect storm’ of PEM from travel, PEM from fitting in an extra Apheresis session just before leaving, starting new meds, coming off other meds (was able to titre off Amitriptyline) etc. 32/n

2. HOUSEBOUND changes: Crashes = awful (I was mostly floor-bound, my spine couldn’t tolerate bed).

It passed & my activity level increased slow & steady in July.

- memory & cognition (I retained more & could concentrate more)
- yoga!
- small household jobs (using walker)
33/n

The most significant “housebound but improving” for me was being able to reintroduce using social energy.

We had several visits (my Mum was here from Australia) and local friends & families came for tea (outdoor, masks, HEPA filters).

Pacing was key. I still get PEM. 34/n

A month ago, we drove to Germany from Italy to undergo the bulk of my Apheresis treatment.

With help from community & crowdfunding, and with more strength thanks to my baseline improving, we made the trek north once more.

Video on Instagram: instagram.com/reel/ChbyelBoX…

35/n

3. OUT OF THE HOUSE changes:

A few weeks in (now 8 treatments total), I felt another “bump” / increase.

I’m now having Aphaeresis 2/week and tolerating that level of activity - often recovering within 1 day (😮) not 6, not 3, ONE.

This post was day-after a treatment

36/n

https://twitter.com/ElizaCharley/status/1558423902052909056

3. OUT OF THE HOUSE CHANGES: I had Dutch friends drive across to visit us for an afternoon - I was able to be rolled outside in my wheelchair, lay on the grass on my mat. In the bright SUN. with NOISE. And TALKING. #pwME #TeamClots 37/n

📷with Stan Forebee & Davita van Der Velde

3. OUT OF THE HOUSE: my partner’s family visited. (With windows open and HEPA filters on) We had a social movie-watching night TWO nights in a row. And while rest & pacing was required, I tolerated it with crashing.

I made them watch Aussie-classic “The Castle” 😂

38/n

3. OUT OF THE HOUSE: We attempted (and failed) a 60-minute visit to the museum round the corner.

Museums are my happy place & Impressionism is a fave period.

It didn’t go well. World of pain, vomiting once home, neurological bs, the whole shebang. #pwME 39/n

I’ve had 13 treatments now, I will have 15. I’m continuing anticoags, we’re looking at antivirals & I’m continuing my usual “ME energy” stuff like NADH, L-Carnitine & various supplements.

Things that *haven’t* changed: tinnitus, chronic nasal infections, insulin resistance 40/n

In sum, testing for microclots & treating with anticoagulant triple therapy & H.E.L.P. apheresis has been a good choice for me personally. #TeamClots

I have longterm relapsing-remitting viral-onset non-Covid Myalgic Encephalomyelitis. #MECFS

41/n

Questions & disclaimers: I’ve met people here with #longCovid and those with non-Covid #MECFS. Treatment has not helped everyone. I am not a doctor and this is not medical advice.

Will it last? Will it continue to improve once treatment stops? How will I be in winter?

42/n

Thank yous!! @BeateJaegerMD (& the nursing staff!) thank you for your bravery, belief & willingness to try.

🙏 researchers @resiapretorius & @dbkell for your commitment to people with ME.

🙏@smithsj & @j_b_kennedy for clinic contact

🙏 @doctorasadkhan @BinitaKane & more!!
43/n

Thank you Mum and Dad (@RosGleadow @gleadology) for dropping work last minute to jump across from Switzerland to Germany to come & support and translate in my first week here.

Keep fighting for impact on climate change!! 🌍 #WomeninSTEM

44/n

finally, thank you to my American/Italian love, David Shackelford. 🙏❤️ You met me when I was more well & have crawled every step with me through this disease mire, even to the point of being my full-time carer.

📷 From healthier times, the week we met, 4 yrs ago. #MECFS 45/45

WithOUT crashing 🤦‍♀️ that should say