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

Newsletter February 2021

An Update from Chris Armstrong,
Director, Melbourne ME/CFS Collaboration

The Melbourne ME/CFS Collaboration is the fifth and newest OMF funded collaborative research center. After making the journey to Australia to set up the Collaborative Research Center (CRC), Director Chris Armstrong began the groundbreaking study that he hopes will improve the lives of ME/CFS patients of Australia — and beyond:

Moving countries is stressful at the best of times, and these are not the best of times. It took three months traveling on an emotional rollercoaster of flight cancellations and availability to get from California to Australia. This would have been demoralizing in any other situation, but this year I could not help but feel lucky and thankful as we all were experiencing the same hardships and many others have it a lot worse. With quarantine and moving behind me, I am pleased to share that my new team and I at the Open Medicine Foundation Collaborative Research Center in Australia are launching a Longitudinal Study of people with ME/CFS. While we know people with ME/CFS often suffer the same or similar symptoms, we do not know if the same or similar underlying biological problems trigger the symptoms. By looking at the biological differences in individuals with ME/CFS at mild and severe moments of their disease, we can start to piece together what may be causing their illness and what circumstances improve or exacerbate their symptoms. Longitudinal Study Overview Participants with ME/CFS will be asked to:
  • wear heart rate monitors
  • fill in surveys
  • provide finger-prick blood drops
  • collect urine samples from themselves while at home.
We will look for patterns between wearable data, reported symptoms, and biological changes in blood and urine at different levels of disease severity to determine the cause or exacerbating aspects of each individual’s disease. By monitoring people with ME/CFS in this way, we can identify and accumulate the many biochemical changes that may reflect recovery or symptom improvements, and ultimately, diagnostic biomarkers could result. We are aiming for preliminary data by the end of this year. The Longitudinal Study will be one of several projects we are beginning in the next few months at the Melbourne ME/CFS Collaboration established by Open Medicine Foundation in collaboration with Emerge Australia. Both these nonprofit organizations have been incredibly supportive of the ME/CFS community and my research.  I feel fortunate and thankful and look forward to providing further updates to the ME/CFS community.

Commemorating National Caregiver Day

A caregiver shares her touching story

This past February 19 marked National Caregivers Day. Open Medicine Foundation would like to take a moment to acknowledge and thank all of the selfless caregivers who help to support their loved ones with ME/CFS and related complex, chronic illnesses.

To acknowledge the resilience and strength of caregivers in our community, we are honored to share the story of a mother and caregiver to a son who is severely ill with ME/CFS:

“My name is Rebecca Groble and I am the mother of Gabriel Hull, who is severely ill with ME/CFS.

In the summer of 2018, he was on a fellowship in China and became very sick. Initially, the doctors thought he might have leukemia or another blood disease, but soon realized he had a severe case of mononucleosis. It was a scary time for us. We were back home, and he was across the globe. I was getting ready to go to China when he started stabilizing, and he told me not to come. He improved and was able to continue the fellowship. However, instead of traveling around China after the fellowship ended as he had planned, he came straight home to Illinois.

"Despite the pain and heartbreak, I still have found beauty in my relationship with Gabriel."

That summer, Gabriel spent a lot of time resting. Fall came, and he went back to school for his sophomore year at the University of Chicago. By the spring, he started feeling worse and was cycling between wellness and severe fatigue. By April, school was too much for him, so he withdrew from classes and came home. My husband and I moved him out of his dorm. It was heartbreaking. Eventually, he was diagnosed with ME/CFS. He is now completely bedridden. “

In February of 2020, Gabriel became a patient of an ME/CFS specialist, which has given us hope. It’s still a roller coaster ride where we see improvements, followed by crashes. Although the crashes are terrifying,  the improvements make us feel optimistic. Gabriel can whisper now. He no longer wears headphones. He is still sound sensitive, but no longer needs earplugs. However, we need to keep the house quiet, and he cannot watch TV, listen to music, or text with his friends.

Our family has been through so many difficult changes. This situation has caused us to lose friends who don’t understand. Fortunately, other friends have stepped up and have been there for us. The kindness of the community has given us hope and strength.

 Of course, it’s hard to see my son in this condition. He is a musician but can’t play his piano because he is bed-bound.  He was an active college student and volunteer. He walked from one end of our town to the other instead of driving, biking, or taking public transit. But now, he’s reliant on us for all tasks such as toileting, eating, and brushing his teeth. If he wants a sip of water, he needs one of us because he can’t lift a glass. 

Gabe has a few friends in town who still reach out. They have brought over cards and flowers, which reminds Gabriel he has not been forgotten. The Hillel community at the University of Chicago has been supportive of Gabe, too. One girl made him a bracelet, and another sent a stuffed animal. This is so important for Gabe to know that friends love him, care about him, and hope for his recovery. 

Despite the pain and heartbreak, I still have found beauty in my relationship with Gabriel. We have short conversations where Gabriel will whisper to me, and I will write my response on a paper pad. Gabe has whispered to me a quote that he would like to share with the community:

“Because of post-exertional malaise (PEM), ME/ CFS makes you fear all the things which once made life good and beautiful. First school, then seeing friends, listening to music, bathing, even eating. Now I am afraid to even laugh. It could cause a crash and make me permanently worse.”

Gabriel is the driving force behind the fundraising that we are doing for OMF on Facebook. Gabe whispered to me he would like me to organize a fundraiser for his birthday to support OMF funded research into ME/CFS. Each donation puts a smile on his face. He did a Facebook fundraiser last year and raised around $4,800 for OMF. This year, I started a Facebook fundraiser on his behalf because he’s not capable. Our goal was $7,000, and we reached it in a week.”

We are so moved by the generosity of Gabriel’s family. ME/CFS is a devastating illness, with complex challenges that impact the lives of patients and family members alike. We appreciate all the caregivers who step up to meet these challenges with compassion and strength.

We invite caregivers and patients to visit our Resource Center webpage to find a variety of helpful information. Here, parents can also find useful information and resources to help their child with ME/CFS.

Thank you to caregivers for all you do to support the community, from your OMF family.

Read more

Check out our FAQ page!

OMF has created a new frequently asked questions (FAQ) page, available on our website!

Check it out now

Don’t see an answer to your question? Feel free to contact us: info@omf.ngo. We hope you find this to be a valuable resource! 

Got an unwanted car?

You can help OMF this winter by donating any unwanted vehicles taking up space at your home. Cars, trucks, SUVs, boats, and even farm equipment can help us accelerate our work to end ME/CFS. Donating is easy, and the pick-up is free. To get started, visit careasy.org. 

*Please note, this option is currently only available in the United States.

Share your story with us!

Your story is important. By sharing your experiences, we can increase awareness and understanding of what it is like to live with chronic, complex illnesses.

At OMF, we also understand the importance of community. Sharing your story starts meaningful conversations and connects you to others within our network of patients, advocates, and allies.

Submit your story today to info@omf.ngo*


*By submitting, you consent to letting Open Medicine Foundation use your story for our public social media platforms or website.

If you are able, please consider contributing to our effort to
uncover research-based answers.

Help us improve the quality of life for all sufferers of ME/CFS and other
chronic complex diseases, such as Post Treatment Lyme Disease Syndrome
and Fibromyalgia.

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