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

Recording of Virtual Open House now available, and OMF honors Mother’s Day!

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Last Saturday, OMF kicked off the first day of May Momentum with our Virtual Open House! Each director of the OMF Collaborative shared details and updates on the exciting OMF funded research projects, powered in part by the generosity of your donations.

We are excited to share that we’ve uploaded a recording of the full event on our YouTube channel, so you can now watch at your own pace:

Watch Now*

 

*Please note: A full schedule of speakers is included in the video description. 

Honoring Mother’s Day

A Mother with ME/CFS shares her story

We would like to take a moment to wish the entire OMF community a very happy and hopeful Mother’s Day! At OMF, we recognize the challenges faced by mothers who have been affected by ME/CFS and related, life-altering diseases.

To commemorate this important day, we are honored to share an interview with Veronica. As a person with ME/CFS and a mother of three, Veronica shares what it is like to be a mother with ME/CFS.

As a mom of three, what is it like to balance motherhood with ME/CFS?

Managing motherhood with ME/CFS is not for the weak. I’ve only been sick for three years, so I’ve had to learn a completely different way of being a mom than I have been used to.

On my good days, I can drive the kids to and from school and activities, chat with them in the car, give them snacks, and feel involved in their lives. On my bad days, I stay in my room with the door locked. My kids know that if the door is locked, I’m resting, and they can maybe try again later.

If I’m feeling up to it, I’ll unlock the door, so someone can pop in for a snuggle. Then I have to tell them when I’ve had enough, which is always difficult for me to do.

For the past six months or so, I’ve been grieving the loss of the mom that I was. This process has been arduous but necessary. One night at dinner, I told everyone that the mom they knew before was gone. That I’m going to try my hardest to get better, but it’s going to take a lot of rest, and everyone will have to pitch in. We all cried and hugged. It was very emotional.

Are you able to explain your illness to your three children? If so, are they able to understand?

I am able to explain my illness to my kids in different ways. My 12-year-old daughter has Ehlers-Danlos syndrome and POTS, as I do, but she functions like a normal kid for the most part. I feel like she “gets it” more than other kids her age would. My sons are six and four; my six-year-old thinks I have a headache all of the time and that’s why I need quiet and rest. He’s really smart, and maybe I’ll explain ME/CFS to him soon. My four-year-old cannot remember when I was well, and he doesn’t grasp what goes on with my health. As far as he knows, I’m “the best mom ever”, which he tells me every day.

What is one of the biggest challenges you’ve faced being a mother with ME/CFS?

The biggest challenge I have faced as a mom with ME/CFS is my ego. I want so badly to be a “normal” mom; I was very active with my children before getting sick. We were always going on hikes and day trips, I’d pack everything up for the day and take off on an adventure. I will say, however, that this has been a silver lining of COVID for me. It’s been an equalizer, we’re not missing out on anything right now, and it’s not due to my illness. If you’re reading this and you’re healthy, please recognize that the life that you’re experiencing during lockdown is the daily reality for many, and it won’t go away after COVID.

“My advice to other parents with ME/CFS is to learn how to parent yourself.”

What’s your most significant piece of advice to other mothers struggling with debilitating chronic illness?

My advice to other parents with ME/CFS is to learn how to parent yourself. It’s hard to hear, but you have to choose yourself first when you can. My kids have way too much screen time, because that’s just what we need to do to cope. It’s not worth it for me to try to play a game or do a craft with them if it’s detrimental to my health.

Despite these challenges, Veronica remains hopeful for the future. “The research that OMF is doing right now gives me so much hope,” she says. 

Whether you are a mother with ME/CFS or a caregiver to a child with ME/CFS, we acknowledge your tremendous strength and thank you for all you do. We will continue working urgently to fund research into ME/CFS and related complex diseases, as we hold people like Veronica in our hearts. 

Please consider giving the gift of hope this Mother’s Day by supporting OMF’s May Momentum campaign. Donate today, and help ensure that people like Veronica can return to the healthy lives they deserve. 

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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