Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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

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

You Look Good

ME, CFS, post-viral fatigue;
to the pain in my brain it doesn’t matter – it’s crazy.
Call me what you may,
just don’t call me lazy.

You only see me on my good days;
Never on my bad.
Unless you come to visit me;
Which no one ever does – it makes me sad.

Today will be another day of lonely despair;
But I will keep living … under duress
and savor
each tiny flash of simple success.

Skeleton leaf

N/A

ON THE BAD DAYS

By Edith Kaplan

“It could be worse”, she said

And that is certainly true

But my mind screams back loudly:

“IT COULD BE BETTER TOO!”

“It’s just a cold”, she said

If only that were true

My tearful heart cries out

Oh, if you only knew.

Nothing with this illness is “just”

In many more ways than one

It may be a small sneeze for you

But my whole life comes undone.

The private pain

No one can see

As I watch my life

Fall away from me.

Come back, I plead

I want much more

Not less and less

Than I had before.

“It is what it is”

Some like to say

But platitudes don’t help

Keep the grey away

I must dig deep

Within my core

To find those sparks

Of my life once more

And to accept the fact

That they cannot see

From the land of the healthy

What life’s like for me.

Hope

By Jen Larkin

With each new year
We send our hopes
For solid research
Far and near

Surely one day,
Somewhere, sometime
A light will shine
And lift the grey

Our efforts won’t
Have been in vain
When others can live
Without our pain

So many years –
So many lives –
Such loss and grief.
Too late for me I’m sure,
Yet still there’s hope
For those to come
Belief, understanding,
Answers, cure?

JL 2019

The Owl

By Christina Baltais

Inga Stream

By Bill Hope

This is an artwork about my partner Inga and her ongoing struggle with ME / CFS.

Pathways

By Marilyn Lemmon

One Minute You’re Walking on Air, The Next You’re…

Mixed media

Life Jacket

By Karen Napier

Sometimes in the river of difficult circumstance,
I forget that I am already wearing a life jacket.
Lying face down in the water, I fear I will drown.
Then Jesus whispers in my ear “Turn to me.”
As I roll over to look up,
my face comes out of the water that is overwhelming me.
I take in a deep breath of hope.
I am safe; I was safe,
I just forgot to make use of the life jacket I was wearing.
Keeping my eyes on Jesus;
keeps my face out of the water of discouragement.

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

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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