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

Planting seeds of hope: A mother’s plant sale benefits research

Today we share the story of a mother and daughter in Canada, the power of family, and their efforts to support critical research into ME/CFS.

In 2017, Rebecca’s life was turned upside down when she came down with an illness that prevented her from leaving her bed and going to work. Soon after, she was diagnosed with ME/CFS. Over the next six months, Rebecca found herself completely confined to bed, sleeping up to 36 hours at a stretch. “I was barely awake, could not speak, or lift my head,” Rebecca explains. After the initial six months, she began to improve slowly. Although still primarily bedbound, on occasion, Rebecca can now watch a movie with her kids, shower, or send emails. “Never all three,” she explains. “I have to choose very purposefully how to spend what little energy I have each day. It makes life very slow.”

Rebecca’s mother, Margaret, soon came to realize the gravity of Rebecca’s illness. Margaret explains, “My biggest challenge was to learn how ill my daughter was. Rebecca would tell me how tired she was. I would reply, ‘Of course you are. You have a job and a young family.’

I found out later that Rebecca was not just tired; she was mentally and physically exhausted. Rebecca was going for many diagnostic tests, and all the results were negative. We had no answers. When doctors tell you that nothing is wrong, someone like Rebecca thinks, ‘It must be in my head. I have to fight this and keep going.’ This made her symptoms worse over time. Many doctors either didn’t believe her symptoms or said she was healthy. Even after she had the diagnosis of ME/CFS, the medical professionals were very dismissive and said there was nothing they could do to help, and she would be like this for life.

In March of 2021, Margaret noticed that OMF had joined the Long Covid Alliance. “I saw this was an opportunity for more focused research examining coronavirus as a possible trigger for ME/CFS,” she explains.

Sadly, I can’t just kiss my daughter better. So, I helped with things like medical appointments and making meals. Then I decided to try fundraising.”

Margaret swiftly took action to help support OMF’s fundraising efforts in Canada. “Our first two fundraisers raised a total of $679. My third fundraiser was more ambitious, and I raised $1,200. I dug, divided, and potted up to about 200 plants with help from my husband. It was advertised as a plant sale to raise funds for OMF’s May Momentum fundraiser. Proceeds went to OMF in support of ME/CFS research.

Both Rebecca and Margaret remain hopeful for the future — “With the increase of Long Covid patients, I hope more attention will be given to this incredibly debilitating illness,” Rebecca says. “In the meantime, I focus on counting the small victories, and I am grateful for my supportive family.”

Stay Informed

Be the first to hear our research news.

Subscribe Now.

No thanks

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.

###

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