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

Honoring ME Awareness Day: Stop motion film made about ME/CFS, and more!

Honoring International ME/CFS Awareness Day

Stop motion animation film made to raise awareness of ME/CFS

Today, May 12, marks International Awareness Day of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and Post Treatment Lyme Disease Syndrome (PTLDS). To commemorate this important date, we are honored to share a beautiful film about life with ME/CFS made by Inga Topolnicki, a person with ME/CFS, OMF supporter, and advocate.

Last year, during OMF’s 2020 May Momentum campaign, OMF first shared Inga’s story. She told us, “For the past few years, I have been using what little energy I have to work on a paper stop motion film called “An Existence Project.” The purpose of this film is to portray what life is like for someone living with a moderate form of ME/CFS. Much work needs to be done to communicate the serious nature of this illness  to the public, and  I hope my animation will play a small part in creating this change.”

We are excited to update that Inga has completed her stop motion animation film, “An Existence Project!”  Watch it now. 

Inga Topolnicki, creator of An Existence Project. 

Recently, OMF had the opportunity to interview Inga about her film, advocacy work, and life with ME/CFS.

How long have you had ME/CFS? 

I’ve had ME/CFS for seven years now, but I was sick on and off for eight months following a viral infection while on a university exchange program in France.

What inspired you to create the stop motion animation video?

When I was first diagnosed with the illness, the only resources I could find online about living with ME/CFS were lists of symptoms. I couldn’t find anything that dealt with the complex emotional challenges we are forced to confront when diagnosed with such a horrible, life-altering illness. I was grieving for the loss of the life I had been lucky enough to lead and knew that I needed some way of communicating this.

I also knew that there were many people in the same situation as me or an even worse one. I thought that a short animation would be something accessible we could show our family and friends. Visual metaphors have a fantastic ability to communicate a more nuanced and impactful picture.

What was the biggest challenge you faced in creating this video? 

The biggest challenge I encountered, by far, was figuring out ways to pace the production of it while dealing with my ME/CFS symptoms. There was a year when I was mostly bed and housebound and couldn’t work on it at all, and many other scattered months when working on it was impossible for my body. It was such a long-term project that sometimes I thought I would never be able to get it done, but I learned how to break each task down into minute pieces, and it was motivating to see it slowly coming together.

How long did it take you to create this video?

Because of these challenges, it’s taken me six years to finish it! I made all the watercolor paper props myself, shot all the footage, did the image editing and post-production, and wrote and recorded the music. Now that it’s done, it feels worth it because I have learned so much along the way.

What do you most hope to accomplish through sharing your video?

Chronic illness isolates us physically from others but also from society by a lack of understanding. I want this film to help connect people again from a place of mutual understanding. It is challenging for someone who has not experienced this illness to grasp the idea that it impacts every aspect of your life, every single day. I hope this film will help people to see how tough even mild or moderate ME/CFS is to live with. 

We would like to extend our sincere gratitude to Inga for using her limited energy to create this beautiful film to help raise awareness of ME/CFS.  OMF is proudly featured at the end of the video, and we do hope you can find this to be a valuable resource to share with your personal community.

Inga also adds,

“The video now has subtitles in 8 different languages: Dutch, Korean, Chinese (Simplified), Swedish, German, Spanish, Norwegian (Bokmal), and English. The other languages that are hopefully coming soon include Russian, Italian, French, Greek, and Polish.”

Watch the full video now.

Share these webpages with your personal community!

To help the broader community better understand ME/CFS, Fibromyalgia, and Post Treatment Lyme Disease Syndrome, we recently updated our website! These pages include information on disease symptoms, diagnosis, and current OMF-funded research:

We hope these can be a valuable tool that you can share to help educate your personal community — family, friends, and medical professionals. 

Don’t forget to also check out OMF’s resource center! This page includes information for parents, patients, or to share with your doctor, and much more. 

We hope you find these resources helpful in navigating the challenging world of chronic, complex diseases.

Please give to #MayMomentum and show the world that fighting ME/CFS should matter to everybody! Please visit May Momentum for more information.

 Prefer to use Facebook for one time giving?
Check out our Facebook fundraiser here.

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

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo