Share your story / Amplifying the chronically ill / #MyalgicEncephalomyelitis / #MillionsMissing / Contact: millionsmissingpodcast@gmail.com @windscattered

Joined October 2020
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Testimony #9 Hear @LitsaDremousis uninterrupted testimony of her 32 year journey living with #MyalgicEncephalomyelitis Listen 🔊 sptfy.com/Pj2k Don't just pass on by, PLEASE *share* her important story ❤️ #millionsmissing #pwme #Cancer More info in comments ⬇️
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Millions Missing Podcast 🔊 retweeted
13 Nov 2025
Replying to @3eyedlambs
It’s 9.5 years of ME for me, completely bedbound since 2018. No care, hardly any help. It’s hard. 2 years is not that long, some can get better but few do on their own.
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Millions Missing Podcast 🔊 retweeted
Today is my 45th birthday. I frankly should not have survived the last 5 years, but somehow I’m still alive. All I want, all I have wanted, is safe, adequate, compassionate medical care, so I can have a chance at LIVING again. I’m still not getting it. #Care4ComplexCanada
Replying to @eyeMD4u
This is EXACTLY how I almost died in 2021, boarded for 6 days in a filthy, crowded, understaffed Vancouver ER waiting room. Everything you described happened. They allowed me to be discharged because my husband and I knew I would not come out alive otherwise - I was admitted via a different ER within 24 hours, deranged electrolytes, no longer able to walk, weighing 75 lbs, bedsores, having multiple severe drug reactions, fluid overload, later refeeding syndrome (inadequately treated), developed some kind of toxic/metabolic encephalitis from being overdosed for months with prednisone on top of thiamine deficiency. I also believe that’s when I caught Norovirus, as it’s when I started having diarrhea that never stopped - I later had Rituximab which made me even sicker, and never cleared it, but it was only detected six months ago. I STILL haven’t been treated for ANY of this or been allowed any specialist care since, and only found out about the thiamine deficiency last year thanks to an American neurologist who did testing on me. That week in the ER was the end of my life as I knew it, before that I was a normal sick person. It was the beginning of a spiralling cascade of iatrogenic damage that led to much more severe illness and disability, losing all my specialists, nearly doing MAID, being blacklisted from the medical system in Vancouver, being dropped off treatment for my autoimmune neurological disease, and left for dead and retraumatised over and over. Despite enduring unthinkable hell and fighting to recover, with only moderate success, I continue to be shut out of care and have only been harmed more every time I’ve had to seek ER care since. At this point I refuse to go. I would rather die than be put through that again. Today is my 45th birthday, it is over four years later, and I STILL have no medical care, am still being punished by the medical system for the harm I suffered, and live in daily terror that one of my now many more severe medical issues will become acute and I will have no choice but to go to the hospital again, and be mistreated and harmed and traumatised. It is one of the top things that still makes me want to go through with MAID. Sorry to dump this all on your thread, but there are so many others suffering severe medical harm and neglect in this country - they tell me their horrific stories - and most doctors don’t seem to even want to know what is happening. How is it acceptable that this is HEALTHCARE?? It’s literally disabling and killing people, and nobody seems to care. Make it make sense. Canadians - yes even medically complex people and seniors - deserve so much better. SAFE medical care, and a shred of compassion when we are in our most vulnerable moments.
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Millions Missing Podcast 🔊 retweeted
I feel really overwhelmed and stressed and worried about running out of money in December and having to deal with far too many issues like my mobility scooter repair and working on advocacy things and the petition.
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Millions Missing Podcast 🔊 retweeted
The pain and pressure inside my skull are immense and unrelenting as I lie in darkness, waiting for enough people to notice what’s happening—and, hopefully, care enough—to help support me in my pursuit of accessing the life-saving specialist treatment that will finally end this nightmare and give me my life back. I’ve long passed my breaking point, held together only by the fierce determination and hope of one day being able to enjoy life again, and by my absolute refusal to abandon my feline best friend to a shelter if I’m gone. I am exhausted—traumatized beyond words after twenty-five years of living with Myalgic Encephalomyelitis, many of which were spent misdiagnosed and psychologized—and now, once again, having to fight so ferociously just to be believed and taken seriously, trapped in the inept, indifferent Kafkaesque machine that is the Swedish healthcare system. For half a year, bleeding in my brain has caused iron to accumulate in my nervous system, where it becomes toxic to nerve tissue—triggering severe neuroinflammation and progressive, permanent damage to both the brain and cranial nerves. All this happened while I was misdiagnosed, disbelieved, and repeatedly sent home from the emergency room. It has left me gravely ill, with devastating and rapidly worsening neurological symptoms, including severe sensitivity to light and sound—no watching TV, no drawing digital art, no creating or listening to music, no photography, no playing guitar, no enjoying a sunny day. There is no quality of life whatsoever, and no chance of even the smallest distraction from the constant barrage of severe neurological symptoms that have completely destroyed my life. My imagination has been my only refuge—picturing living another life, finally waking from this long, cruel nightmare—but imagining a different reality while lying in the dark at home, sustaining progressive brain damage, is not an acceptable substitute for the very real treatment awaiting in Germany. There is a very clear path forward, and the mechanisms behind my health crisis are not a mystery—except, apparently, in Sweden. The specialists who have diagnosed me and can help are waiting in Germany, yet here I remain in the dark, held back by the cost of accessing their care. Every day without that specialist care brings more permanent brain damage. It’s a quiet scandal, and it shouldn’t be. Help me make some noise. gofund.me/506bd49f7
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Millions Missing Podcast 🔊 retweeted
Once I can stand for more than a minute and write without getting a migraine and once I can leave my house again and once I can put on make up and once I can go get a haircut and once they cure long covid and also upgrade air quality in public spaces it’s over for you bitches
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7 Nov 2025
Daniel shouldn’t have to do this. Living with #MECFS, he’s travelled from the UK to Sweden to help his friend Rich get life saving treatment driving him to Germany — spending what little energy he has and risking his own health because Rich can’t get the care he needs. 1/3
I don't think I need to say anything about this photo other than say please share, prese also give to the go fund me if you're able. gofundme.com/f/Help-Me-Get-L…
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ME orgs, Health Rising, journalists in general - please help bring exposure and help save my life, as well as raise awareness for the rare convergence of conditions 💔 reddit.com/r/CSFLeaks/s/oOXZ…
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This whole situation is scandalous Somebody please help spread awareness This cannot just happen in silence 💔 reddit.com/r/AskDocs/s/ZJF5b…
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Millions Missing Podcast 🔊 retweeted
30 Oct 2025
I can’t lay on my back because I have severe spine pain. Can’t lay on the sides because of severe hip pain. Can’t lay facing the pillow because my neck with CCI get strained. So I just change positions as many times as I can, making me even worse. Can’t even exist. #mecfs #pwme
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I'm so exhausted đź’” I desperately need life-saving specialist treatment in Germany Please share as wide as you can - you might reach another person able to help save my life there has to be people out there who care enough to click a button I'm well beyond my breaking point
I desperately need exposure for life-saving treatment in Germany Please share - not a scam - all medical documentation avaliable - please 💔 Three rare conditions converging destroying my brain: • CSF leak →bleeding into CSF→ Infratentorial Superficial Siderosis (iSS) • Triple-Positive APS → requires warfarin blood thinner → increases bleeding and fuels iSS • Together=vicious cycle of bleeding, neuroinflammation, iron toxicity & permanent nerve death #GoFundMe #livingwithss #csfleak @csfleakuk @spinalCSFleak @csfleakinfo @LivingwithSS @APSFA #APSAwareness gofund.me/872b025e3
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Millions Missing Podcast 🔊 retweeted
12 Oct 2025
I can deal with there being no treatment for my illness. But I can't deal with there being no (health)care.
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With illnesses like ME, you are always one disaster away from having what little you have taken away from you in an instant, and very few - if anyone - will care You will just disappear, and people will be ok with that because you were already gone in their eyes It's not ok
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🧠 Headache Academy Reflections A clear CSF leak thread ran throughout, culminating in Dr Cheema's brilliant overview of orthostatic headache syndromes. 🗣️ Precise leak site now located in most MRI ve patients 🗣️ SIH curable in majority of patients Momentum building! 💙
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RT @ChaosIsCrying: I am dying without my needs met. I have lost 28% of my total weight since I had to start relying on crowdfunding to surv…
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Early October is the sixtieth anniversary of the Blackburn 'mass hysteria' incident. Why is this relevant? One of the people that had their say on the matter was a young Colin McEvedy.
First in the St Hilda's/Blackburn timeline.
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