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

Oyster

By Jenny Simpson

They told me the world was my oyster

Future like the sky, dreams supersized

I thought I could outrun the pain in my bones

Body of moans, still I kept going.

Till I crashed, shattered, a window of pain

Trying to stand up, collapsed again and again.

Denial wasn’t just a river in my head

As I sank to the bottom of the

I don’t want to sea-bed.

My world became an oyster in an oyster shell

Shut up and shut off, cut off from all is well.

Its salty sting soaking my skin

Open just enough to let a drop of see in.

With it the grit of irritation

Rubbing me raw in consternation.

Could I believe in a front-to-back down-upside whacked

Way to the way it all happens?

Days and babies and years and hope all come to being in darkness.

Nothing was precious until everything was.  Pause.

Achingly slow I learned to go with the flow

Dreamed someday and somehow I would some way let go

Of wishing and waiting for life unbroken

Hands soft, fingers brave cautiously open

This oyster is my world, right here is my pearl.

Meanwhile…

A thought
a picture
to endure

UNITED

United hands we clasp to cope,
So much to grasp, so great the hope.

Each ill with M.E., both husband and wife,
In sickness and health, vows for life.

Shoulder to shoulder, weary eyes watch “UNREST”,
Hot, pain-filled tears flow, this life is a test.

We watched as our lives played out on the screen,
Remedies failed, along with each dream.

How does one cope, with no work and no play…
United in hope, we must find a way.

Heavy hearts entwined, combined in hope,
Hands clasped together. We Grasp. We Cope.

Rhythm of Life

By Pat Fero

The Rhythm of Life
The earth knows.
Current flows to the continental divide.
Planting season in Portugal.
Monet meadow flowers the mountain.

The earth knows.
Storms wash the land, reviving life.
Fires sear old pine, sowing growth.
Snow slides shatter silence
sculpting the hillside.

Creatures know.
Salmon swim upstream.
Cubs emerge in Spring.
Hatchling turtles scramble to the sea.

Creatures know.
Wolves sense diseased marrow.
Whales beach in the shallows.
Death comes as it does and so it goes.

Humans know.
The night sleep and the day break.
Joyful hours mesh one hot summer eve
with Monday morning routine.

Humans know.
Life on 24/7.
Chop, clock, tick. stop. Diced thoughts.
Manage the moment lost.
I’m late, I’m late.
Apologize, euphemize.
The rat race, time crunch, time flies,
time is money. Catch you later.

But I don’t know.
Days go by as night. Night, days.
Weeks pass unnoticed.
Where am I now?
What happened when?
Time lost. I dawdle and find ways,
“How are you today?”
Today. Day. Fine today.
Time threads tangled, stuttering, staccato memories, shapeless images
gray, blue – green, pink, yellow.
A Monet without perspective.

Last year, decades passed
a blur and a muddle.
I wandered cursing Alice.
Was it the March Hare? May?
The Queen of Hearts? Spades?
Why does it make a difference?
A Monet has perspective.

This year, I am the eye of the needle.
My rhythm of life pulses and beats
and so it goes seamless transition
one day to the next, a flow
mindlessly sculpting a stream
to the river to the sea.

It’s quiet this night 
inside my mind’s bouquet.
Slender stalks and weeping willow boughs
sway into clusters and tiny blossoms.
Yellow and red and parrot blue
move through green leafy shadows.

I know the clock stopped and rats don’t race.
Time can’t crunch nor fly
or buy my ice cream
Bubble Gum Dreams.

My rhythm of life pulses and beats,
then flows as it does and so it goes…

Cold air in July from a vent
on a windowsill in a hospital room
killed the mums,
but the lilies, yellow, bloomed.

A precious gift, this fluidity.

PF

Different faces of M.E.

By Petra van Driel

Elisa

By Anonymous

In honor of a friend with ME / CFS

Jen Brea

By Michael Todd

LOST

By Carol Hale

As sleep eludes me my mind flips and flops around like a fish out of water.

I swim again through the troubled waters of my life

Looking at snippets and snags of problems over which I worry.

So many could have beens, should have beens and would have beens

Want to be, must try harder to be, will I ever be again?

Where did I go?

I sank alone and unwillingly down so deep, so slow, so long – long years I cannot remember all.

Why can’t I find me now?

I had known my name, how hard the game and exactly how to play it

But the rules have changed, remaining hidden

Only to surface suddenly and swiftly pull me under without warning again and again.

This seaweed of illness in which I have become entangled

Makes meaningful life almost impossible.

i’ve lost myself. Who am I now?

Am I nothing more than an insignificant speck floating in the endless rippling oceans of the cosmos?

Thank You OMF

I venture out into the sunlit day
pink lipstick, dangling earrings, bright smile
too soon my head hammers, eyes burn, muscles ache
I stagger back to bed dazzled by my brief
encounter with the uncommon world
but
i am no longer the lonesome warrior
struggling in a war I cannot win
looked on with disdain and doubt
feeling shamed by disbelief

how can I begin to tell you
how it feels to know that now
there is a longed for hopeful future
just within our reach

MY OLD CHAIR

By Carol A. Hale

My old chair has always been there
Cradling me through dark years of illness and despair
Easing me through months when everything hurt ‘cept my hair
Rocking me as I helplessly watched independence fly way into thin air
Soothing me through sleepless nights when awakened from yet another nightmare
Its arms holding me as I mourned the loss of those who ceased to care
Listening in the dark silence while I cried and my very soul I did bare
Ever a comfort through days cloudy or fair
I do declare
Nothing can compare with my old chair

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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