One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016, we have been collecting stories of people missing from their lives due to ME, which we display at demonstrations around the world, and circulate on social media.

We are collecting short personal stories again this year for #MillionsMissing as we have done in past years, but we also want to curate stories about living with ME around larger themes, such as parenting, disability, aging, career, poverty. Our goal is to tell our story around more general topics to reach a wider audience. We plan to curate stories of ME around these themes to share on social media and with the media.  

So, there are two ways that we would like to collect your story, and we welcome you to submit both or to choose the format that works best for you.

**Please know that we will use these stories in demonstrations around the world, on social media and in our communications. If you’d prefer to keep your identity anonymous, please only use your first name and a photo that does not show your face.

1. Submit a Story along a Theme

Submit 1-3 paragraphs about how your story with ME relates to these topics. Choose one topic or write on several topics. See prompts below. Please include a photo, or an image the represents your story if you do not want to share a photo of yourself. You can also choose another general topic to write about, if you prefer.  

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Parenting theme

I am a parent with ME.

I can only spend one hour with my child per day.

I dream of the day when I can run, play, bathe my child.

I no longer have the energy to pick up my child.

I am asking my government for biomedical research, treatment and hope.

I have a child with ME

Watching my child suffer with no way to alleviate it breaks my heart.

Disability Rights Theme

I live my life horizontally

My illness is invisible.

I may appear in public for one hour, and then spend the next 5 days recovering from that hour where I appeared “normal.” Most people do not see me during the time that I am in bed.

Aging Theme  

What does it mean to age when you are not able to “retire” from this state of chronic illness

What does it mean to age when ME has prevented you from fulfilling your dreams

My illness is changing as I grow older.

Women’s Rights

How does your story of ME relate to women’s rights? Read more about health equity for women.  

Career Theme

I have lost my career due to ME.

My hopes of having a career have been destroyed by ME.

What it means to live a life without a career.

Young Adult Theme

What does it mean to have ME as a young adult, especially in the face of expectations about becoming independent and reaching certain milestones. What are the unique challenges for schooling, building a career, dating.

Health Disparities Theme

How does your race, class and gender factor into your treatment and experience as someone with ME?

Childhood Theme

My childhood has been altered by ME.

Poverty Theme

This is what poverty looks like with ME. I find it difficult to get benefits because…

 

2. Submit a short story 

In previous years, we have displayed these short stories of people missing from their lives.

SUBMIT a short story based on this format. Please include a photo. These stories have also been translated into Instagram stories – see below for examples.

READ the Stories of the #MillionsMissing.

SUBMIT your story to [email protected]. Please include a photo, your country and city of residence in the email (so that we can sort the stories by location). Or, include an image the represents your story if you do not want to share a photo of yourself, although your face will be more powerful.

In previous years, we have turned the #MillionsMissing stories into interesting clips on Instagram, which we plan to do this year, as well.