Myalgic Encephalomyelitis Kills

A group exhibition

The ME/CFS community hears about the deaths of its members every week. Some die due to the illness itself, while others die because of the lack of proper care and support. The deaths shared publicly are only the tip of the iceberg; how many of us die alone, never to be heard of again?

This exhibition explores various artists’ interpretations of the topic of death and ME, from the impact of those who have passed, to personal feelings and journeys of living in a body that is failing. Myalgic Encephalomyelitis Kills is our community’s way of raising awareness about this matter of life and death.

  • Help by Line Langager is a photograph captured in 2025, when her ME/CFS was very severe. The image is a representation of her feelings from a time when she was neglected and essentially left to die from starvation and dehydration. Find more of Line Langager on Instagram: @nebulow

  • Digging, Desperately by Samantha C was created in 2026, when her ME/CFS was severe. Samantha captured this image by placing physical props on a scanner, a process also known as scanography. This artwork is about the frantic and chaotic search for something, anything, that will help this illness. It captures her feelings from years of struggle, trying things that only make her worse, fighting against her body, fighting for her body. That in her search for answers, she was digging her own grave. That even after doing everything she can to protect herself and her loved ones, she was still losing people, losing members of our community. It reflects her feelings of clinging to any shred of hope that she and all her friends will be okay. Find moe of Samantha C. on Instagram: @samanthahahehe

  • Time Waits for No One by Winterchild, whose ME/CFS fluctuates between moderate and severe, is a photograph created in June of 2024. The artwork's alternate title And I'm Left Behind...As the Seasons Roll on By... takes inspiration from the song Seasons by Chris Cornell. The photograph compares living with ME to a bird with a broken wing. The bird sees its flock, but cannot join. It wants to be free, fly around, and see the world, but it's bound to the ground. Life is passing by without being part of it. Waiting to heal – maybe forgotten someday, maybe rotten someday. Find more of Winterchild on Instagram: @winterchild.27

Panda eyes
Who stares back at me
A dead thing
Sunken skin and drooping lids
The sign of my aliveness in this stasis
Is the falling of my tears

I feel like I am dying
I am being buried
Alive
I feel the earth compacting against my chest
Waiting for my ribs to cave in

To hear about so much death while in this state
While my muscles scream and I can barely move
Is to wonder am I next?
Is this what they felt?
Is my clock ticking closer to it's end?

I want to mourn and care for our community
But I can barely think
I cannot see for the fog in my brain

The ceiling watches me
And I watch the ceiling
And I wish my skin would let me sleep

  • Panda Eyes by Liliom Stanley is a poem written in 2026. This poem is inspired by her personal experience from a couple of months ago. Find more of Liliom Stanley on Instagram: @liliomwrites

  • I'm Screaming With You by SK RILEY, who lives with very severe ME/CFS, is a photograph created in 2025. Find more of SK RILEY on Instagram: @i.overcome.me

  • Uncle by Kelly Meiners, PhD, is a painting created with Acrylic, Charcoal, and Oil Stick on Raw Canvas in 2025. This painting is part of a larger series of artworks titled the Relinquish Collection (2024-2025). The series explores the process and challenges of her journey toward acceptance, peace, and happiness.

    Uncle captures a dark part of this journey. At one point, Kelly counted 147 new symptoms caused by Long COVID. Some were simply strange – like losing her fingerprints, experiencing internal tremors, or having her toenails stop growing. Others, rooted in her brain injury, were far more severe. She developed akathisia and sudden waves of suicidal despair that felt unlike anything she had ever known. Akathisia brought an unbearable, relentless internal agitation. She spent hours rocking back and forth, counting breaths, praying for the strength to make it to the next one. The suicidal impulses were not traditional ideation – they were abrupt, overwhelming surges of despair with no warning and no logical connection to her emotional state. When she searched for answers, she found research showing that suicide risk in Long COVID patients with neurological injury presents differently than in clinical depression: it is sudden, emergent, and tragically, often more fatal.

    According to one study, among severe patients like herself, 1 in 5 die around their first COVID-versary. Society doesn't describe the people who jumped from the burning World Trade Centre as “committing suicide,” they were escaping unbearable circumstances. She believes the same compassion and understanding should be extended to those facing the unrelenting and life-threatening symptoms of severe Long COVID and Severe ME. Find more of Kelly Meiners, PhD, who currently lives with very severe ME/CFS, on Instagram: @kellymeiners.art

  • Death of Identity by Hannah, who has severe ME/CFS, was created in 2025. The artwork was made by digitally overlaying two photographs, capturing her feeling of losing her identity to illness. It reflects days consisting only of resting, surviving, and battling with authorities who deny support; organising food and medication, personal hygiene, and cleaning, because they must be done. Days when her body is left with barely any energy or concentration, no matter how much she wants it. When everything becomes overwhelming and much has to be left undone to prevent PEM. As these days became her life, she felt much of what had defined her before ME/CFS fell away: hobbies, work, friends...her identity blurred and became increasingly invisible. Find more of Hannah on Instagram: @pappmahann

  • A Silent Scream by Alicia Pallenchier was created in 2026, when her ME was very severe. This artwork is a digital drawing she created with the assistance of AI. She used artificial intelligence to generate a visual base, then fully redrew the image over it. She reworked the lines, facial tension, and expression. She made the drawing her own so that it would reflect exactly what she wanted to express.

    The drawing represents the silent scream that many people with severe and very severe ME experience. Alicia created it to reflect the exhaustion of being unable to cry out physically and the reality of trying to speak, warn, or protest while remaining unheard or dismissed. It also reflects the deaths themselves, how many happen quietly, far from public attention or recognition – but above all, the painful yet loud silence that surrounds them. The stitched mouth symbolises this imposed and stifled silence, while the hand pulling on the threads shows the painful tension of a scream that cannot come out. Find more of Alicia Pallenchier here or on Instagram: @sweet_villal_panda and on LinkedIn: Alicia Pallenchier.

Fever dreams.
I wake up screaming.

Only realising I’m living days worse than any nightmare you could ever be dreaming.

Can only lie still and watch blood pooling on the floor.

There’s nothing you can do about it.
You swiped the wrong final door.

Machines peeping.
People running.

They read my file.
I can see they stop caring.

Even the silence hurts your body that is failing.
Him blaming me. I can see he’s bailing.

Come on girl, it’s just a shadow from your past.
“Fuck how I enjoy this. It’s nice to see you fall”.

Pieces of shattered headphones on me.
Blood dripping from my cheek.

Him wrapping his arms around me.
I feel like I can’t breathe.

Shaky legs. Tremulous hands.
”Karma found you. It’s too late to make amends”

  • Unbearable by Erika K is a poem written in 2026. The poem is about Erika's own near-death experience due to a combination of severe ME and her abusive partner. Find more of Erika K on Instagram: @erikakiviniitty

  • Suffocated by Niko Suvisto is a digital photograph taken in 2026 when his ME/CFS was severe. His goal was to capture how it feels to have the most severe form of ME. He chose the symbol of a rose, as blue roses represent those who have died of the illness. The hand ‘strangling’ the delicate white rose represents how ME takes everything from its victims. The image represents a moment in Niko’s life when he felt like he was buried alive, about to suffocate. Find more of Niko Suvisto here or on Instagram: @nikosuvisto

  • Gorge by Greta Granö is a digital drawing created in 2026, when she had moderate ME/CFS. This artwork captures her feelings from a time when her illness was getting more and more severe. When she felt as if she was falling into a gorge, hanging upside down, grabbing the walls with her fingers and toes, and still sinking deeper and deeper into the gorge. The lower Greta went, the more severe she got. At the bottom, there was very severe ME, and eventually, death. This artwork aims to capture these feelings of fighting to survive, only to slip into an even worse state. Find more of Greta Granö here or on Instagram: @piengreta

  • Scream of Despair by M. Czajkowski is a photograph taken in 2026, when he had severe ME/CFS. He created the work in the hope that someone would see what is really happening to ME patients; his inspiration was desperation. Find more of M. Czajkowski here or on Instagram: @mczajkowski5000

  • Buried Alive with M.E. by Anil van der Zee is a film made in 2026 when his ME/CFS was severe. This artwork is a testament to the many people who have passed from ME/PAIS, some of whom were close friends of Anil. It represents how these deaths were preventable, often caused by neglect, disinterest, and a lack of knowledge of the disease; how this has been happening for decades, with so little being done. Anil felt it was necessary to make a film about severe ME as the reality of the condition is out of plain sight. The symbol of body bags takes inspiration from German protests that use body bags to represent those who live on the brink of death, buried alive by inaction. Find more of Anil van der Zee on Instagram: @AnilaboutME

I don’t want to live like this any more

But I don’t want to die

I really don’t want to die

So what other choice do I have but to live like this?

One of the necessities if you are to live more with Severe ME, is to exist less

Those relentless hours of sensory deprivation may allow a few minutes of life

Is it worth sometimes living more, if it pushes you closer to death?

Is it more important to be alive, or to experience life?

I will do anything to stay living

But sometimes I live too much and feel the pull of death

In order to not die I must act like I am already deceased

It’s a sacrifice I will make in order to keep existing

  • Dying to Live by Fran Haddock is a poem written in 2026, when her ME/CFS was severe. This work captures the fear of death that comes from living with Severe ME, combined with the desperation to not live through so much suffering. It explores how, to have glimpses of life with Severe ME, one has to live in a state closer to death. Find more of Fran Haddock on Instagram and TikTok: @franhaddock_

  • ME Kills by Nikki is a digital artwork created in 2026, when she had severe ME/CFS. She created this work to show healthy people how serious ME is. Find more of Nikki on Instagram: @therealchronicillnesscrafter

  • Each Life A Universe by Kelsey Shirley was created in 2026, when her ME/CFS was moderate. This artwork was made using scanography, a technique that uses a flatbed scanner to capture images. Kelsey chose the subject of proteas for their symbolism. Proteas bloom in harsh conditions, representing resilience and strength. They are used to honour unique lives and the bravery they exemplify. She incorporated an image of a face crying from her own CT venogram. Kelsey's goal through this work was to emphasise the individuality of each person who has died from ME, how they were each a whole person, with dreams, hopes, interests, and passions. Each had a whole complex universe inside. Visually, she hoped to capture the look of dying out stars, each loss so vast. Find more of Kelsey Shirley on Instagram: @ksureart

  • Lost by Fiona May was created using oil pastel on watercolour paper in 2025. Find more of Fiona May on Instagram: @fionamayart

  • Loss and Suffering by Mary is a digital artwork created in 2026 using Procreate, when her ME/CFS was severe. This artwork is a reflection of her own near-death experience due to medical neglect, as well as seeing others around her going through it, too. From losing friends and peers from ME, medical neglect, and more, to losing family, all the while being unable to grieve properly while suffering internally. Find more of Mary on Instagram: @chronically_mary_life

  • Lost in the Dreadful Void by Isabel Aurora is a photograph captured in 2020 on 35mm Kodak ColorPlus Film. She took this photograph on a beach at night when she had mild ME/CFS and reinterpreted it in 2026 when her ME was very severe. This artwork captures what it is like to have very severe ME while watching others die from the disease. The image aims to evoke feelings of uncertainty and being lost in the dark, a state that seems to have no end when one is so severely sick. The lights that line the horizon represent hope for a cure and healing, but no clear path to get there. Whether there is a path at all, or if one will drown trying to reach it. Find more of Isabel Aurora on Instagram: @ch4mita.mecfs and @ch4mita.film

The room sits in darkness
Whether day or night
Silence pulses through the air
Seeking out the light

As your eyes adjust
You see something very slight

It barely makes a move
But for shallow waves of breath
You merely see the outline -
Just a body in a bed

As your vision sharpens, there -
A Someone left for Death.

  • A Someone by Amaria, who lives with moderate ME/CFS, was written in 2024. This poem aims to capture severe ME from an outside perspective, showing that these aren't merely stories but real people who mean something to others. Find more of Amaria on Instagram: @__amaria_

  • Waiting by Oona Tontti was created in 2026 using oil pastel on paper, when she had moderate ME/CFS. This piece is about the feelings of whether death is waiting for her or if she is waiting for death. Find more of Oona Tontti on Instagram: @oonatontti.art and on Facebook: @artbyoonatontti

  • The Cross Over by Mirthe van den Berg is a photograph captured in 2025. Find more of Mirthe van den Berg here or on Instagram: @mirthevdberg

  • My Time Is Running Out by Áine O'Hara is a photograph captured in 2026, when their ME/CFS was Severe. This piece was created with the support of Áine's carer, Briley Mullen. These photographs emerge from a world narrowed to a room, a bed, and the small distances in between. This period forced them to reimagine their entire life, including how art can be made, shared, and experienced. Scale, repetition, humour, and text became tools for working within constraint. While images function as both documentation and refusal, records of living through illness and acts of resistance against a world that equates movement and productivity with presence. Find more of Áine O'Hara on Instagram: @misc.aine

We can't be expected to use headlights when we drive forever

They're inconvenient and make my eyes hurt

I've been driving for years without them, and I haven't killed anything

Well, I don't know that for sure

I hit a few things in the night, but nobody told me they died

And it doesn't matter that much anyway

They're animals

The chances of me killing an actual human are much lower!

They probably had pre-existing conditions too - I saw one of them limping across the road

I can't be held responsible for that - surely?

And it's not like headlights protect me from danger either

You can't expect me to go out of my way just to make sure someone else doesn't get themselves hit

I'm always responsible when I cross the road

I look both ways

A car would never hit me... would it?

  • Headlights by Syd King is a poem written in 2024, when their ME was severe. As someone who has had very severe ME and who was immunocompromised, Syd was tired and horrified at those who can mask and take viral precautions but choose not to, as not doing so will only kill those who are already sick. He often saw masking compared to wearing a seatbelt, but thought comparing it to headlights was more accurate. Choosing not to use headlights not only risks the driver's health but also that of those around them. This thought process was the inspiration behind their poem Headlights. Find more of Syd King on Instagram: @Mx.Syd

  • I Set a Timer to Be Sad by Bug Lightyear is a photograph taken in 2026, when his ME/CFS was severe. Bugs' artwork takes inspiration from his personal experience and feelings with ME. Bug doesn't usually worry about their own death; they more often think of their situation of not dying. As his illness progresses, he expects he will keep getting worse, but he is not expecting to die of ME. For many, they are not dying from ME but are also not being cured; they are forgotten, slowly fading away like a forgotten bouquet of flowers. The dying flowers represent both this forgotten state and the delayed response of grief, only being allowed to feel emotions long after someone's death, because pacing everything means pacing emotions too. Being sad and feeling grief costs too much energy, and they are not allowed to feel these emotions freely. So he sets a timer to cry before returning to rest and distraction. Find more of Bug Lightyear on Instagram: @bug__lightyear

  • So Much Loss by Andrew Gifford is a photograph taken in 2026, when he had moderate ME/CFS. This artwork was created as Andrew wondered if one day he might be counted amongst those killed by institutional failure and medical neglect. Find more of Andrew Gifford on Bluesky: @andrewgiffordphoto.bsky.social

They kill us
When they say it’s psychosomatic,
That we’re deconditioned
And over-dramatic.

When there’s no care pathway
For Severe M.E,
When they ask us
If we’re going to try CBT.

When the suffering and stigma
And social isolation
Lead to active, unrelenting
Suicidal ideation.

When hospitals subject us
To malnutrition,
Deny supportive care
And treat us with suspicion.

Ignore key signs of deterioration,
Withhold pain meds,
Let us die
From dehydration.

When we’re too unwell
To campaign for a cure,
For those no longer with us
Who deserved much more.

For Judith, Sarah,
Merryn, Maeve.
For so many more,
For those unnamed.

They kill us,
But we hold fast to the fight.
We rise up in strength,
Solidary and light.

  • They Kill Us by Eleanor Rose is a poem created in 2026, when her ME/CFS was moderate. In this poem, Eleanor sought to capture the neglect and abuse that people with ME have endured for decades: from medical gaslighting and disbelief, to isolation and denial of life-saving care. The poem pays tribute to those lost within the ME community and concludes as a testament to the ME community's strength and enduring support for one another. Find more of Eleanor Rose on Instagram: @eleanor.rose.writes

  • In Life and Death by Jon, who has severe ME/CFS, is a digital collage created in 2025. This artwork was created as a meditation on feeling between life and death and the companionship found there. Jon's collages often take the shape of invocations or prayers; in this collage, they were calling for the soft companionship to help hold on to that in-between state. They chose to call upon their deceased furry friends, several of whom had passed away just before this piece was created. Those who walked beside them in some of the most joyous ways, and now lie beside them in the most humbling. Find more of Jon on Instagram: @unravelwith.me

  • ME by Rinji O was created in 2026, when her ME/CFS was severe. The artwork combines a poem and a photograph. Rinji used AI assistance to adjust the photo and place the poem. The photograph that became the background for this poem was captured on a perfectly blue day. The tiny, solitary cloud reflects the quiet disappearance she experienced while the world remained bright and unchanged. She created the work to reflect the person ME took from her, the one who existed before her illness. Find more of Rinji O on Instagram: @accessible.dignity

  • Tropic of Light by Matthias L. was created in 2026, when his ME/CFS was moderate. The painting was made using watercolour on 30 x 40 cm paper, capturing a glimpse of life with severe ME/CFS.

    For years, the room depicted lay in complete darkness. Sunlight was unbearable for the body devastated by very severe ME/CFS. Every ray brought pain and collapse; darkness was the only place where the fragile remnants of life could still be endured.

    Now the tropic of light has been reached – the turning point where, after endless darkness, sunlight finally returns. Golden light floods the empty bed. There is no happy ending. Only headphones and a sleep mask remain, quiet traces of a life that could no longer bear even the light.

    The window casts a sharp shadow across the sheets – a silent witness to release. In the tropic of light, the long darkness ends; not with healing, but with an end to suffering.

    This watercolour painting only hints at what life with very severe ME/CFS truly means over many years. What it cannot show are the crushing symptoms, the thoughts, the fear, and the fragile hope. Find more of Matthias L. on Instagram: @pinselist

There's a valley of the dead within me.
Cemeteries I visit.
I light candles,
bring flowers.
Blue ones and
immaculate white ones,
for they were not
merely torment.

Each painful departure
takes a piece of me
with it,
but leaves
an echo,
an outcry
in a single lament
of the dead and the living.

I assure them
it was not in vain.
That once freed
from flesh's agony
a white-bluish
constellation of martyrs
above my head
they became.

May they rest in peace,
at last,
the dead within me.
Livelier,
more dignified,
today
than yesterday
in the valley of death.

  • Constellation by Caroline Biasi is a poem created in 2026 when her ME/CFS was Severe. The work aims to translate the impact the deaths in the ME community have on Caroline and the meaning they acquire. Find more of Caroline Biasi on Instagram: @em.visivel

  • Endangered Species by Germaine Hypher was created in 2026, when her ME/CFS was severe. She created this work using watercolour, pen, and soft pastel. Germaine was inspired to create this work while painting another depiction of this wildflower for an initiative that shares art of endangered blooms to raise awareness for ME. The flower campanula's common name, bellflower, made her think of a bell tolling for lives lost, and from this, the accompanying words were also born. Find more of Germaine Hypher on Instagram: @craftingapaththroughillness

  • Remember ME by Maddy O’B is a digital drawing created in 2026, when her ME was severe. The artwork aims to represent and honour those who have died from ME, each life remembered with a blue rose. Find more of Maddy O’B on Instagram: @maddyobart

About the Exhibition

Myalgic Encephalomyelitis Kills is a group exhibition that explores the theme of death in the ME community. While there is little research or definitive conclusions about ME mortality, those with ME know how devastating and life-threatening this illness can be. Sources cite factors of systemic and clinical neglect, institutional failure, mental health burden, suicide, inadequate knowledge of treating ME, and poor quality of life, as well as physical factors such as heart failure and cancer, as causes of death among ME patients.

In the most severe form of ME, patients can lose the ability to swallow or digest food, which can lead to life-threatening malnutrition, especially when life-saving treatments such as tube feeding or IV fluids are inaccessible or withheld. Some young people with ME even resort to euthanasia due to severe symptoms and poor quality of life.

Hearing about the deaths of both the young and old is nothing new to the ME community. Through this exhibition, we hope the world sees our emergency.

A Quiet Storm invited artists of all ME severities to submit their art for the exhibition to raise awareness on International ME/CFS Awareness Day 2026. M.E. Kills features artwork from a combined 33 artists, including 25 image-based works, from paintings to photographs, 7 poems, and one short film. The artworks were created between 2020 and 2026.

The exhibition was curated to flow through and capture a variety of feelings and themes. The selection starts with works that evoke pain and a sense of fighting against this illness. It then morphs into works that have a sense of acceptance and waiting. The final works show loss and a sense of peace.

Learn more about death and ME through the following sources:

  1. Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by Stephanie L McManimen et al.

  2. ME Association Research Review: Mortality in ME/CFS by Katrina Pears

  3. Infographic: SF-36 Mental Component Score for ME/CFS vs. Select Other Diseases by CrunchME

  4. Investigating the ME/CFS experience through qualitative analysis of memorial entries by Zoe Sirotiak and Hailey J Amro 

Exhibition curated by Lily Lime, Niko Suvisto, and Greta Granö.