Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Hope & Heart Unite for ME / CFS

Hope & Heart Unite for ME / CFS

PoetryOMF-e1546821494260

First Hope & Heart Unite for ME / CFS

Poetry & Art Slam

Your words help increase awareness and strengthen our community.

Your words and art have power. 

The heart and hope shared in your words and images truly left us speechless. We thank each and every person who submitted an entry. You have truly touched the hearts of our community and inspired many people.

We are honored how our OMF community has ascended to new heights for this project. We received over 130 submissions from 17 countries. The poetry and art are available for you to view here.

Our panel of judges and your votes combined to identify the poems that most represent hope. In total, all submissions received over 2,000 online votes.

We are pleased to announce the winning poem is Even Though by Laurie Glass. Laurie captured the essence of hope for so many. We thank Laurie for her message and thoughtful use of imagery.

Even Though

By Laurie Glass

Even though we’re sick, in pain,
and our bodies feel so drained,
we feel the agony unfold,
our lives are put on hold,
we keep our inner strength.

Even though we’ve gone away,
and we’re missing ev’ry day,
we feel we’re on our own,
yet know we aren’t alone,
together we are stronger.

Even though we’ve all been wronged,
we’ve been ignored for oh, so long,
for years we’ve been denied,
our needs were set aside,
we are grateful things are changing.

Even though we’ve been unheard,
others help us spread the word,
together we’re unstoppable,
we’re making changes possible.
We’ll never stop trying.

Even though we are in tears,
grieve the loss of many years,
experts work on our behalf,
to try to get us back.
We’re grateful for each one.

Even though our hearts are breakin’,
even though our lives were taken,
we try to keep on dreaming,
we try to keep believing
that better days will come.

Poetry is a form of art used to express ideas, feelings, and messages. We invited the ME / CFS community to join OMF & the non-profit, Lev Leytzan, for a Poetry & Art Slam to share messages of hope for a healthier future for all people affected with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS). Thank you to all who participated with your word expression and art, sharing your dreams for a healthier tomorrow.

Keeping the Hope - An Original Song of Hope by Maxwell Elefant and 95North

Cure M.E.

By Anonymous

I can’t escape this body
it fills me up with death
Like my cells, they – are not working
and so it is, I guess

Mitochondria are failing
the flame will not ignite
No ATP created
my body can not fight

The cells are hibernating
I am a sleeping bear
The brain is filled with fogginess
my conscious is not clear

My body is a prison
my mind is running free
I’m dreaming of tomorrow
when I will dance, you see?

The hunter is a virus
or some immune deficiency
The doctors haven’t figured
their cure is not for M.E.

But years have passed
and maybe, coincidence set free?
Some oncologists from Norway
they found a long lost key

I have lost a decade
and others maybe more
We reach out to the public
Our lives are worth much more!

Raise the funds for research
to find the final key
The puzzle will be finished
and that will set us free!

A poem to ME / CFS, my longtime lover

By Zeraph Dylan Moore

I.

It is brutal, terrifying, almost endless, I said,
but there were no words appropriate, and in the end,
I stopped trying to tell people about us.

I was becoming naked around you.
My muscles were dropping away, or rather,
it looked like dropping but it felt like tearing from the bone,
so it was in truth a strange kind of intimacy,

as if I was being prepared for an act of love
that required the most extraordinary nudity.

From the outside, no one knew what was happening.
You look so well, they’d say, you look so good.
At night your love would come and tear me open,
and in the morning I’d see the missing parts.

And people would smile at me and say, I wonder why
you cannot walk and I’d wave my stumps around and scream
that my legs were gone. It was like that, with us.

You were the worst lover.

Every morning I found it harder to get up. It was
like my childhood obsession with leprosy. Back then, I wanted to bask
in the question: what would it be like to die, while you were still alive?
“Going, so slowly, so ugly and so old,” I wrote,
thirteen and already aware of the terror of romance.

I used to have other lovers, before you.
The sky over my head as I hiked winding trails, the pleasure of cycling til my legs went numb,
swimming in the sea, the mystery of soil
& plants, working in the earth.
But you were a jealous lover.

Finally, it was just you, a romance of terror,
a romance of pain and hopelessness.
These were your special talents, for you were talented,
and even if your lovemaking involved no kisses
it was still the most intense I had ever known.

II.

It took a long time after that to get to know you,
perhaps even to forgive you. It took longer still to learn
how to tiptoe around your traps, your pitfalls
that can expand in a moment into canyons,
spasms of emptiness, at their bottom a wine-dark
ribbon, a river as deep as the Mariana Trench.

It took a long time to learn how to love you,
to hold space for your breathless pain,
your sudden and uncontrolled descents,
your demands for silence, for darkness.

And in the sixth year of our love, I turned to you in our bed and cupped your shaking head
in my palms, brushing my thumb over your lips, your tremulous and battered-blue skin.
It is brutal, terrifying, almost endless, I said,
and I love you, and we will survive this.

Commissioned portrait

By Michael Todd

The ache

By Anonymous

The ache of missing out on laughter filled games at Christmas
And still waking up with a body full of pain
despite the one item on my wish list
I miss walking with a clear head and clean hair
And not stumbling over words
and mixing where with were or there with their
God fair is fair
I cannot stare at this screen another day and keep my hair
Remember when I fell ill the despair
The sky was grey but glared too brightly at me
My eyes wouldn’t let me look any higher than the bare brown trees
Too hot but cold, sweating, shaking
Sobbing quietly like the muffled bird song losing all control
My whole body craves just to feel normal
My faith began to crumble, like a sand castle in stormy weather
I was more alone than ever
I prayed and prayed towards the highest clouds but never got sent anything
Until a soft scratching at my soul showed me the many things that I’m blessed with
Two thousand days of suffering but my families love is endless
I hope one day soon someone will finally put an end to this

Hope for ME

By Angela Everitt

Aching joints, muscles too
Waking every day with the worst kind of flu,
Brain so foggy, can’t think straight
Hope I can walk as far as the gate.

I’m so tired I can’t even talk
So many pills, I rattle when I walk
“You don’t look ill” others say
Try being me, just for a day

Doctors are baffled and some don’t even care,
If you’re stuck in your house they can forget that you’re there
Is anyone listening, does anyone know what to do?
Is there any hope for me or any hope for you?

An invisible illness, that others can not see
It’s very isolating, living with ME.
It won’t help to have a rest, that is not a cure.
I’d nearly given up, my future was unsure.

But out of the blue there’s cause for celebration,
We’ve got wonderful support from the Open Medicine Foundation.
Ministers are speaking in parliament about lack of care,
Saying that we’re “really ill” and the way we’ve been treated is unfair.

Unrest has been screened inn countries near and far,
Opening people’s eyes to show how ill we really are.
Thanks to Ron, Janet, Linda and the rest of the team
“There may be hope” we’re beginning to dream…

Millions missing and ribbons that are blue,
After decades of no funding and little research too
Suddenly there’s progress and real hope for me and you.

The Light

My left arm is on fire. My right arm is a metal rod.
Or so it feels.
But still, my arms move.

The world is grainy. Black and gold dots.
Or so it looks.
But still, I can see.

My feet burn. Every small, slow step must make scorch marks upon the Earth.
Or so it seems.
But still, I can walk.

‘Health’ is forgotten.
Pain is my norm.
But still, I live.

And beauty is my life. The sunlight shines into my dark room. And I remember to love life. And so, still, I will live.

Meanwhile…

A thought
a picture
to endure

Fibro Blues

I just want to talk
But I can’t even walk

Without the meds
My feet don’t tread.

Put a pain patch on my hip.
But won’t put one on my lip.

I got the Fibro Blues.

Hands so numbed freezing cold
Everything is hard to hold.

My ears are red & feel so hot.
What is it that I’ve got?

Body hurts in every bone.
Should have had some cortisone.

I got the Fibro Blues

Bursitis, tendonitis
And costocondritis

Did I say migraine?
Who loaded this freight train

Insomnia, sleep apnea
It’s fibromyalgia!

I got the Fibro blues.

When ME Comes Close

By Alyssa Storrs

it’s like i woke up from a dream
or so it seems, until the lethargy
i thought would leave follows me everywhere,
like a toddler who can’t play by themselves.

the exhaustion
lingering
nagging
climbing

up my spine to my brain
it’s like this fatigue has one question-
“may i dine with you?”

never mind the pain or this new visitor
i want to blame-
he doesn’t listen for the answer.
just pulls up a chair and stares
directly at me.
piercing my worn out gaze,
“i’m here to stay; let’s have lunch.”

i don’t want to eat, just to punch
you in the face.
yet you look at me with grace
and say, “let’s go for a walk.”
i don’t want to talk and i look away.

you show up for every meal though,
and pull up that chair again and again.
i don’t look at you for weeks, but then i peek.

i want to know what you look like.
what is your name?
why would you befriend someone like me?

i gaze into your tender brown eyes and hear,
“i’m here to stay.”
oh-and by the way, my name’s Peyton.

you will find me in your forgotten words,
unfinished laundry and in the difficult
morning lurch to get out of bed.

i’m not just in your head-i promise.
your happy, optimistic personality will start to fade.
and all those papers you start to grade at the beginning of your career
will come to an end.

but i will lend a hand, asking you to
bend to the left and right, seeing landscapes
you’ve never cared to look at before.

but it will scare you.
you will learn to take deep breaths,
and let out millions of screams you’ve kept inside.
each expression of anger will lead you closer
to your truth. your mom’s ancestors to the left
are asking you to reveal their buried secret.
your dad’s to the right want to bask
in freedom and heal.

you are the one they have been waiting for.

i am a lonely companion, taking you to
peer at this shifty shadow.
but i am near and you will grow.
yes, slow.
yes, risk.
yes, joy.
yes, help.

yes, you are stronger than you ever dare know.

I am me not M.E

By Collette Wallace

I have M.E…

I aim for it not to define me
and be all people see

I love socializing
Find traveling mesmerizing
I loved working with multiple brands
And seeing live bands

I am now mainly bedbound on my own
But my love for my interests has only grown
They will always be part of me
And I will not solely be defined with M.E

Despite being constantly ill
Always wishing for a magic pill
I strive to work through the pain
And learn to dance in the rain

Be kind to yourself each day
Push the frustration away
Make a positive mantra & repeat it
To help strong mental health & keep it

Fight feeling down
Reverse that frown
Don’t shed a tear
Smile ear to ear

Keep your head up high
Look at the beautiful sky
Not today, go away,
tomorrow is new start to the day

Ignore friends that dropped you fast 
Hold close kind friends that tightened their clasp
It feels like there is no end in sight
But please like me never give up the fight

Terms of Use

Lev Leytzan (non-profit) & Open Medicine Foundation (OMF) are pleased to provide you with “Hope & Heart Unite for ME / CFS” for your personal inspiration. Nothing on this blog constitutes a recommendation for medical treatment or care. Lev Leytzan and OMF have the exclusive right to decline any portion of, or complete, submission.  By submission of work, you agree to the following statement:

I agree that by submitting my original work (which may be in the form of a poetry, artwork, stories, photography or other content) (the “Work”), in consideration for the opportunity, but not the obligation, for the Work to be included in OMF and Lev Leytzan’s online and other social media and related outlets and in any other form of media.  I understand and agree that OMF and Lev Leytzan shall have the full right and non-exclusive lifetime license to use the Work, in any media, on a royalty-free basis, alone and in combination with other works, and to modify or edit the Work for editorial purposes at OMF's and Lev Leytzan’s discretion. If under the age of 18, permission from a parent or guardian to participate is granted.

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