Join the Stanford Medicine X Global Access Program

In less than a month I’ll be flying to Silicon Valley for Stanford University’s Medicine X conference, one of the premier medical conferences in the world. I have been awarded an ePatient Scholarship and feel very honored to be giving a 90-minute workshop presentation called “Health Advocacy in the YouTube Age.” The workshop will highlight my experience as a film producer over the past year and will empower the audience to use film, video, and visual media to bring attention to the most pressing and …

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A Wonderful Piece of Art From an ME/CFS Sufferer

A Wonderful Piece of Art From an ME/CFS Sufferer

 

I am a professional artist who has been dealing with CFS for 11 years now. It has been worse than ever the past three years and has interrupted life plans, especially my desire to get an MFA in painting and perhaps start a family. I am a very upbeat person, but a lot of my work is quite somber and I think it largely stems from my condition. I’m sharing a self portrait as I think that is most relevant. (4x3ft, ink, acrylic, charcoal on …

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A Poem About Chronic Fatigue Syndrome (MECFS)

By: Elizabeth from Pittsburgh

It’s nights like tonight when I’m feeling so low,
That I sit & cry wondering where did my life go?
You would think I’d be over it after almost 15 years.
But everything, everyone I’ve lost is represented by each tear.
My tears fall for lost friends, my divorce because I got sick & special
times I have missed…
Each individual tear falls with purpose
but there are way to many reasons to list.
This illness is so cruel! Leaving me all alone.
People don’t make plans with me,
they eventually don’t …

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An Excerpt From `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand

An Excerpt From `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand

I have written many poems about M.E. and recently published a book on Amazon called `My A-Z of M.E. (Myalgic Encephalomyelitis)` by Ros Lemarchand. This is what I have written at the beginning of the book

I first became ill in 2002 and at the time I didn`t know what was wrong with me. It felt like the worst flu ever but it didn`t go away.I was sent for lots of tests and by a process of elimination I was told in 2003 that I had …

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Ceil’s Struggle With Chronic Fatigue Syndrome (ME/CFS)

I am 63-year-old woman who was diagnosed 8 years ago at 55 with Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) Seemingly overnight I went from a person with abounding energy to a person with relentless fatigue. Not fatigue like feeling tired rather fatigued that hits like a brick, leaves you with no reserve and no relief despite rest. For me it is coupled with coursing pain throughout my limbs. All my adult life I had been a stereotypical type A personality, driving myself to do …

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Betty’s Story About Struggling With ME/CFS

By Betty from Mitchell, South Dakota

In December of 2010, just 6 weeks after my baby boy Iver, known to most of you as Gus was born, I began noticing that something was very wrong with my body. You see previous to my pregnancy with Iver I had been diagnosed with hypoglycemia, so I believed that I just needed to take better care of myself, but then I began experiencing new symptoms unexplained by that diagnosis. I was tired all the time, my muscles were weak, …

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Life’s Essence: A Short Poem About ME/CFS

Life’s Essence
By: Michelle from Mount Horeb

There’s so much life around me,
and so very little of it left inside me.
But that doesn’t matter.
As long as I have enough to still see You by,
to bear witness to beauty and love.

Those who believe that life, at it’s essence,
is meant for more than this,
are all lost in not knowing.

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IMAGINE: Caitlyn’s Poem About Life With ME/CFS

IMAGINE

by Caitlyn From Ben Lomond, CA

Imagine if someone told you
your life would never be the same
happiness, joy and laughter
turned to darkness, sorrow and pain

Imagine if someone told you
there was nothing you could do
to turn your life back around
and be the same old you

Imagine if someone told you
“there is no cure for this”
would you live your life all the same
or weep for the things you’d miss

Imagine if someone told you
your freedom would be taken away
from running, jumping and playing
to wheeling yourself away

Imagine if someone …

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Lolly’s Testimony at Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting

Here is a story we recently received from Lolly in Silver Spring, MD. The video is from the  Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, on June 14, 2012. If you would like to fast-forward to Lolly’s testimony, she can be heard speaking on Video 14 of the playlist (accessible from drop-down in top left corner) around 18:00-23:00. She gives a powerful, and incredibly well-spoken account of her struggle with Chronic Fatigue Syndrome (ME/CFS) for 27 years. Take a look…

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The Silent Place: A Poem About ME Chronic Fatigue Syndrome

The Silent Place

by: Sally from Brighton, UK

We talk about my pain,
The exhaustion that reaches all the way into my bones,
The days I can do little more than curl up in bed.

I speak about the loss, the fear, the frustration.
He nods knowing exactly what I mean.

Then he waits quietly for a minute and says,
“This silence: it’s where you live now.”

And it is.

That quiet place between crumbling and healing,
Never quite knowing which one you’re heading towards.

That place where no one can honestly say
“I promise it will get better”.
That …

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