#myalgicE

[myalgicencephalomyelitiscfstom]

https://x.com/useless_priest/status/1869677047947399230

[iammadelinepod]

Canada Day is still such a problematic thing. Unless and until we treat first Nation communities with respect and inclusion and basic human rights supports and address race bias and the amplification that first Nation women experience on gender bias plus disabled first Nation person's experience over and above the usual nonsense (IE how with many disenfranchised and discriminated upon diseases like long viral diseases these communities are not even getting diagnosed). Also lgbtqia+ and two spirit first Nations experience an exponential amount of discrimination over and above the usual horror.

We have not yet met the bar of adequate on how we treat our first nation communities. The lack of addressing of gender, race, disability and disease bias within Canada must be recognized as being far over and above that difficulty for first Nation communities as well as people of color particularly, women of color.

It is nice to celebrate a long weekend, Canada has done some good things, but we think we're farther along our human rights accomplishments journey than we are. We have a long way to go. Until we do a Country-Wide *putting on of our big person underpants* and addressing bias in all of its forms within the education, bureaucratic, governmental, legislative, and corporate systems, I don't see how any of this changes, ever.

What's happening to me, the death March off a cliff of gender and disease bias is beyond horrific. But even in the midst of the difficulties I'm experiencing I can only think wow, how much harder it must be for racial discrimination on top of that especially for our first nation communities

The first 5 episodes of the podcast give you a synopsis of what's happening to me. And if you choose to listen remember how much worse it is for those POC communities (I'm not sure it's letting me properly post it via the link feature in Tumblr so I guess you'll have to copy and paste it if that's not clickable) https://podcasters.spotify.com/pod/show/i-am-madeline/episodes/Ep--1---How-do-you-solve-a-problem-e110jks

Here's the latest episode, *Queen Of The Cranky Arses* https://podcasters.spotify.com/pod/show/i-am-madeline/episodes/Queen-Of-The-Cranky-Arses-e2lbfaj

The GoFundMe has most of the news media article links and updates if you need more information(I think I put them in the pinned post of this tumbler as well. But honestly I'm so tired I can't remember). If you decide you'd like to donate the media pieces have links to the GoFundMe so you know that it's for real and it's me.

(but here's the last article for convenience sake https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty )

https://gofund.me/cff39173

[impactofhealth]

7 Steps to Health Equity: Addressing Root Causes Now in 2024

Health equity is more than just equal access to healthcare services. It means giving everyone a fair chance to be as healthy as possible, no matter their background or circumstances. This includes addressing the social and economic factors that can create barriers to good health. Read More...

[lisacatherwood]

Grieving for Loss of Life: The Untold ME/CFS

In silent darkened rooms where millions lie, the world turns unaware of profound loss of life. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is not just a disease it takes lives. While the stories that make the headlines often feature young, beautiful women whose promising lives are cut short, there is a vast ignored population of older sufferers whose lives have been equally devastated for much longer. Their stories too, deserve to be heard and acknowledged.

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

Ruth’s Story: A Lifetime Stolen

Ruth will turn 60 next year. As a runner and cyclist with dreams of becoming a marine biologist, her life was irrevocably altered at the age of 14. After contracting glandular fever, her future became decades of debilitating illness. For 45 years, Ruth has endured the relentless grip of ME/CFS, a fluctuating disease not only widely misunderstood but often dismissed as psychosomatic. Her journey through the healthcare system is marked by disbelief, misdiagnosis, and neglect. From being prescribed antidepressants to treatments like Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) that worsened her condition, Ruth's story is the reality of systemic failure of a system that millions of ME/CFS sufferers face.

In 2018, at the age of 54 Ruth's condition deteriorated to the point where she could no longer sit up or eat, or to tolerate light or sound. Hospitalized, she received no meaningful treatment or advice. Sent home, her plight continued in isolation, a common reality for many with ME/CFS who are forced to endure appalling symptoms alone, away from a medical profession that often gaslights and stigmatizes them.

The Contrast: Young Faces in the Media

The media gravitates understandably towards stories of young, beautiful women whose lives are suddenly and tragically halted by ME/CFS. The striking before-and-after images of vibrant dancers, skiers, and fashionistas transformed into small, grey shapes confined to darkened rooms evoke immediate sympathy and empathy. These narratives are powerful and poignant, and shed light on the severe impact of the disease.

However, this focus leaves out a significant part of the ME/CFS community: the older women and men who have battled this illness for decades, whose stories are equally heartbreaking but never told. They were once young, vibrant people too, with dreams and aspirations that were crushed by ME/CFS. Their lives should not be diminished in value by age.

A Collective Grief

Ruth is not alone. Her story is typical of the unseen majority who retire to darkened rooms. Most sufferers learn to avoid seeking medical help, having learned first that there is none and second that disbelief and cruelty are often the response to their suffering. Decades of terrifying symptoms are borne in apparent silence. The energy required to protest or even ask for help is something many sufferers do not have. The advent of the internet has provided a valuable platform for shared experiences and hedge treatments. The voices of the voiceless are now there to be read.

The loss experienced by those with ME/CFS is colossal. Not only do they lose their health, but they also lose the ability to participate in life’s joys and important milestones. Birthdays, weddings, and funerals pass without their presence, replaced by their daily struggle for survival. Families grieve for the lost potential of their loved ones. Alongside the loss of life of the carers who devote time, energy and resources sometimes for decades.

Ruth lost the children she decided not to have as she was not well enough to look after them. She lost her career in marine biology as she was not well enough to go to university. She lost friends, a husband, and even a sister who eventually said, "I believe you believe you are ill." This is a profound loss of a life.

The Scandal

This is not just a medical issue; it is a profound scandal. Benefits are often withheld, and those with ME/CFS are left to navigate their debilitating condition with little to no support. Their poverty causes further physical suffering.

Dr. Nancy Klimas, a renowned expert in the field, says: “There’s evidence that ME/CFS patients experience a level of disability equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis. The only difference: NO treatment for ME/CFS!” How much clearer could the need for recognition and action be made?

The Call for Justice

Forty-five years after Ruth became ill, and even after a global pandemic highlighted the long-term consequences of viral infections, the architects of neglectful policies are often unchallenged. Even when they wilfully ignore NICE guidelines. Meanwhile, lives continue to be lost in the shadows, as those affected by ME/CFS and now Long COVID endure their lives half-lived.

The parallels with other public health disasters are striking. Like the Horizon scandal, the contaminated blood scandal, and the Grenfell tragedy, the plight of ME/CFS sufferers is a humanitarian crisis that demands accountability.

Conclusion

As we grieve for the lifetimes lost to ME/CFS, action must be taken. It’s time to bring this tragedy into the light, to demand that the medical community, society, and policymakers address the suffering of millions. Only then can we begin to heal the profound wounds inflicted by decades of disbelief and neglect. The loss of life caused by ME/CFS is a tragedy that must no longer be ignored.

Published in The Canary UK August 2024

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[spoonfulofhannah]

Fatigue feels like you have sandbags tied to your feet while trying to walk. It feels like you haven’t slept in weeks. It feels like gravity is pulling you down. It feels like cotton balls are in your head, clouding everything.

Fatigue is NOT the equivalent to being tired.

[iammadelinepod]

Along these very lines, this is petition I have in Canada. If you could please sign and share, that would be amazing. It's going to be printed and hand delivered to the British Columbia legislature. Signatories accepted from across Canada and the world. British Columbia healthcare needs to know that the world is watching. Also important for signatories to know, that the ripples in one place can expand out into the larger world creating larger change

The death march due to lack of disease and disability supports that I've been on these past 45 years was entirely unnecessary. Disease, disability, gender bias have all been driving the bus pretending to be logic. But bias never has anything to do with logic. It is the very definition of specious

If you know of any journalists anywhere in the world who would be interested to tell the story we do have a press release and a press release kit.

The quickest way to reach me is the Twitter account which is also @iammadelinepod (with my dyslexia the short form social media is easiest, yes I know Twitter is a raging dumpster fire, but it does have an active long viral/ long covid/myalgic encephalomyelitis community

This is a post by the leading myalgic encephalomyelitis advocacy group, @meactionnet who has already verified my story years ago.(They've also posted on their other social media, my brain is so tired I'm just not able to find those posts yet to share them with you)

I am fully public now, Marcia doherty, but I have been known online as Madeline to protect my health. But since I'll be running out of money in January, this is my hail mary.

Since no Canadian legacy Media will tell my story protecting my identity, I am fully public, that's why we've done the petition, and heartbreakingly still no legacy Media in Canada reaching out to say they want to tell my story. I think it's going to take International attention from International media and signatories from around the world

The only required information is your name, the rest is optional, and we explain why we ask for it so you can decide what you want to share

say what you will about vigilante justice, but the conversation taking place around luigi mangione is going to change disabled people’s lives. not immediately, of course, but it is a small step toward a much larger goal.

to me, there’s something so disingenuous about decrying violent acts while turning a blind eye to the inherent violence of refusing needed medical treatment. being disabled in the united states makes you uniquely aware of the flaws in our healthcare system. and that is in itself a radicalizing experience. so no, it didn’t surprise me at all to find out that the suspect shared many similarities to myself, being a disabled man with a chronic illness whose daily pain was invalidated by doctors because it was invisible. frankly, i’m shocked instances like this aren’t more common, because disabled people have been on the receiving end of medical violence since the concept of medicine existed.

i talk a lot about cripple punk for this reason- society has a very narrow view of how disability and chronic illness affects people. the reality is, many are angry, and hurt, and bitter. we have deep and seemingly irrational mistrust for doctors. we’re exhausted of having to constantly fight just to exist, and a lot of us hold lingering resentment toward those that hurt us.

the fact is, some disabled people are going to make you feel uncomfortable. they might say or do things that you don’t agree with. this is the end result of a system that consistently fails the chronically ill and disabled, and until we address that, true peace will never really exist

[myalgicencephalomyelitiscfstom]

https://x.com/agy_lena/status/1870032683272941689

[iammadelinepod]

Someone help me make this lovely graphic. The QR code takes you to the #GoFundMe please share. Some Media links(for verification) in the GoFundMe and in this profile. Most recent can be found in this Twitter link which can be shared on Facebook and Instagram (for those who don't know apparently Google and Facebook and Instagram are mad at each other in Canada so you can't share news articles)

[i-the-spoonie]

[mindblowingscience]

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[vampiresblog]

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

[sleepysleepysleepybaby]

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

[phleb0tomist]

today is myalgic encephalomyelitis awareness day if you want to read a little about it. this date was chosen bc it’s florence nightingale’s birthday and she was bedridden for a long period by what is thought to have been ME.

ME was originally understood as a post-viral condition with features similar to MS & polio which generally improved after a few months of rest, but in the late 20th century, figures with vested interests began to claim that ME was a psychosomatic fatigue-based syndrome and that the best treatments were cognitive therapy, graded exercise, and ‘believing’ you will get better, despite this approach causing many patients to decline. under this model, patients are blamed for not getting better and are told that if they’re still unwell, it’s only because they didn’t believe enough or exercise enough. children are told this, patients are told this when they’re bedbound, unable to speak, unable to swallow, tube fed, etc.

gradually the guidelines are being changed to reflect the fact that exercise beyond one’s individual limits causes profound damage to ME patients, but it’s a slow process and the decades of (ongoing!) harm are unforgivable. the care ME patients receive is of such a wilfully poor standard that ive foregone the ER in the past because i would rather die than go there again and be treated as less than human. bear in mind this is under free nationalised healthcare. i skipped free healthcare because that’s how bad it is. ME patients frequently slip through the cracks—after becoming severely disabled from harmful medical advice or forced treatment, many patients are too fearful to ever see a doctor again. it’s pretty common to hear of a patient who has been bedbound for over a decade and hasn’t seen a doctor since their first year of illness. home visits are often denied and hospitals often refuse to accommodate our basic needs (e.g. a dim environment, since light can cause long-term symptom crashes).

the diagnosis of ME has been stigmatised, minimised, and watered down, and patients face neglect and iatrogenic harm on such a scale that at least half the ME patients i encounter have been made permanently and PREVENTABLY worse by inappropriate treatment early in their illness, like i was as a kid. most patients are women, especially the patients who become severe or die; misogyny is a factor, and frequently the patients who face significant medical harm are children or young people who are trusting and can’t stand up for themselves. being traumatised on a systemic scale by the medical establishment also means that these people do not report back to doctors afterwards so the harm goes unreported much of the time. ME charities try their best to document these cases.

25% of patients are severely affected like me. basically, the body struggles to maintain normal homeostasis so any activity can cause symptom worsening (aka post exertional neuroimmune exhaustion) including the activities of daily living like brushing your teeth, speaking, digesting food, being exposed to minor sensory stimuli like light and ambient noise etc.

various links if you want to take a look:

caring for the patient with severe ME

life threatening malnutrition in severe ME

who cares for ME?

25% ME group

severe ME in children

the death, mistreatment, and starvation of maeve boothby o’niell

three cases of ME

about severe ME

why patients with ME are housebound or bedbound

graded exercise does not restore ability to work

patients remain severely disabled after specialist cognitive behavioural therapy

(note: ‘chronic fatigue syndrome’ is an alternative name for ME, but i don’t use it due to the large-scale harm and damage done under that name)

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.