OMF Featured in Inside Philanthropy!
Open Medicine Foundation (OMF) is proud to share that our work has been featured in Inside Philanthropy, a leading source of foundation and nonprofit news! Read the full article below.
“Our Next National Health Disaster.”
Boosting Research into Long COVID and Chronic Fatigue Syndrome
Connie Matthiessen | August 25, 2022
Linda Tannenbaum saw it coming.
When COVID-19 first swept the globe in 2020, Tannenbaum, who founded and now serves as CEO and president of the Open Medicine Foundation, suspected the coronavirus might lead to long-term health problems in some patients — what we now know as “long COVID.”
The Open Medicine Foundation (OMF) supports research into complex, chronic diseases, including chronic fatigue syndrome (now called ME/CFS for myalgic encephalomyelitis/chronic fatigue syndrome), post-treatment Lyme disease syndrome (PTLDS), fibromyalgia, and now post-COVID syndrome. While no one knows exactly what causes ME/CFS, patients often develop the condition after they’ve had a viral infection, and Tannenbaum worried that the coronavirus could trigger long-term, ME/CFS symptoms in some patients, too.
Several studies now indicate that for some COVID-19 patients, this is indeed the case. An estimated 1 in 8 COVID patients develop long COVID — that is, symptoms that persist after patients recover from acute COVID — according to one recent study. And close to half of all long-COVID patients exhibit ME/CFS symptoms, according to research. Another report, published in The Lancet, identified ME/CFS symptoms in many patients in the months following COVID infection.
There is still so much we don’t know about long COVID, ME/CFS, and other complex chronic diseases — which is why Tannenbaum started OMF in the first place. Since it was founded in 2012, OMF has raised over $37 million, and now funds seven collaborative centers in four countries around the world. OMF is also leading the first privately funded study into how COVID-19 transitions to ME/CFS.
Most doctors are not trained to recognize or treat conditions like ME/CFS, (Tannenbaum’s own daughter, for example, saw more than 20 doctors before she received an ME/CFS diagnosis). That’s why OMF recently partnered with Bateman Horne Center to launch the Medical Education Resource Center (MERC), which will educate healthcare professionals about complex, chronic diseases and how to diagnose and treat them.
“Relevant medical education has been a missing link for many healthcare providers treating chronic diseases including ME/CFS,” Tannenbaum pointed out when the center was announced. “As cases of long COVID increase every day, it is critical to equip healthcare professionals with the knowledge and tools necessary to diagnose these diseases early and effectively manage a long-term care plan.”
Cryptocurrency and a legacy donation
Linda Tannenbaum is a scientist, but she didn’t set out to become an expert on complex, chronic diseases like ME/CFS. Then, in 2006, her daughter, who was 16 at the time, developed severe headaches, chest pains and fatigue. Specialists couldn’t identify what was causing the symptoms, and the teen spent over two years in bed.
Tannenbaum was told there was no test or treatment for ME/CFS. She realized — and experienced in real time — how little is known about the disease and related conditions, and how few resources are going into learning more.
Tannenbaum created the Open Medicine Foundation to fill that gap. “I realized that this is a disease that no one has spent money and time looking at,” she said. “We are the only global nonprofit funding research at this level.”
OMF funds research at Stanford, Harvard, the University of Montreal, and at institutes in Australia and Sweden. As is the case with many disease-focused charities, most of the funding OMF has received over the years comes from patients and their loved ones. The organization has also received some philanthropic funding, including a $5 million cryptocurrency gift from a donor who wished to remain anonymous.
Funding for the new Medical Education Research Center came from the Stupski Foundation, a spend-down foundation that will close its doors for good by 2029. The Stupski Foundation was created by Larry Stupski, a former president and chief operating officer of Charles Schwab, and his wife, Joyce. After Larry Stupski’s death in 2013, Joyce remained closely involved in the foundation’s work, which prioritizes early brain development, education, healthcare, and food security programs in low income communities in Hawaii and the Bay Area, as IP has reported.
Joyce Stupski had ME/CFS, and was impressed by OMF’s work, according to Tannenbaum. The philanthropist met with OMF staff and made a $1 million gift to the organization during her lifetime. After she died suddenly in 2021, the foundation board reached out to Tannenbaum with another $1 million gift. “The board told us that the foundation usually supports other issues, but that Joyce liked our work, and they gave us money for general operating expenses,” Tannenbaum said. The legacy donation supported the creation of the new center.
“Our next national health disaster”
Linda Tannenbaum isn’t happy that her prediction about COVID-19’s long-term health impacts proved to be right on. But she is hopeful that long COVID will bring increased attention to complex, chronic diseases like ME/CFS, and that increased attention will translate into more funding, too. OMF leads the largest worldwide nonprofit effort to diagnose and treat ME/CFS, long COVID, and other complex, chronic diseases, and has raised millions to do so, but Tannenbaum is quick to point out that it’s just a fraction of what is needed.
To date, the federal government has been slow and stingy when it comes to funding ME/CFS research. Tannenbaum assumes this is, at least in part, because there are still so many misconceptions about complex chronic conditions. The diseases are difficult to recognize because they don’t have identifiable biomarker that can be tested for, so a diagnosis is typically based on symptoms. “For a long time, the medical world didn’t feel ME/CFS was a real disease,” Tannenbaum said.
In 2015, the Institute of Medicine, which is part of the the National Academy of Sciences, challenged that skepticism, concluding that ME/CFS “is a legitimate disease that needs proper diagnosis and treatment,” according to a press release. The report underscored the difficulties ME/CFS patients face: “Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some healthcare providers have been skeptical about the serious physiological — rather than psychological — nature of the illness. Once diagnosed, patients often complain of receiving hostility from their healthcare provider, as well as being subjected to treatment strategies that exacerbate their symptoms.” The report also outlined a diagnostic criteria for the condition.
But ME/CFS still receives only a small percentage of government funding for medical research, despite ongoing pressure from patients and activists. Last year, the National Institutes of Health announced a $1.15 billion initiative to study long COVID. As the number of people with lingering symptoms mounts, there have been demands for even more. In one recent example, Solve M.E., which advocates for ME/CFS patients, launched a nationwide public service announcement campaign called “How Long?” to raise awareness and push for additional research.
Linda Tannenbaum hopes that private funders will also step up to fund more research into long COVID, ME/CFS and related conditions, an area that has received little philanthropic attention over the years. “There is so much we still don’t know, and so much need,” she said. “People who are sick need to know that there is research happening that could give them relief. Rates of suicide are high among people with ME/CFS: by supporting research, you are saving lives by giving people hope.”
In terms of its impact, long COVID, like ME/CFS, promises to be devastating — both to individual patients and to society as a whole. A perspective in the New England Journal of Medicine called long COVID “Our next national health disaster,” and predicted that more than 15 million Americans could develop the condition. “And though data are still emerging, the average age of patients with long COVID is about 40, which means that the majority are in their prime working years,” the authors point out. “Given these demographics, long COVID is likely to cast a long shadow on our healthcare system and economic recovery.”
It is too early to say how long its symptoms will persist in affected patients. Only 5% of ME/CFS patients recover completely, according to Linda Tannenbaum, and many who do get better temporarily experience a relapse. Tannenbaum’s daughter is doing well; her health is good and she is able to live independently — for now. “It’s a chronic disease and relapse is common,” Tannenbaum acknowledged. “I worry every day.”
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OMF also relies on private donors who step up to fund more research into long COVID, ME/CFS and related conditions.
“There is so much we still don’t know, and so much need,” says Linda Tannenbaum. “People who are sick need to know that there is research happening that could give them relief.
“By supporting research, you are saving lives by giving people hope.”
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