Author: Karen Lee Richards
ProHealth is proud to name Linda Tannenbaum, founder of the Open Medicine Foundation, as ProHealth’s 2017 ME/CFS Advocate of the Year.
“Linda has displayed a constant, magnificent dedication and commitment to patients, and her results have been nothing less than astonishing,” said ProHealth founder, Rich Carson. “In just the last year, she has virtually single-handedly raised almost three times as much money for ME/CFS research than the entire United States government has historically allocated to the disease. It’s absolutely amazing what one person can do.”
Rich went on to say, “Linda is a bottomless pit of compassion and a tower of integrity. She’s a woman on a mission, with a razor-like focus on finding a cause and a cure.”
Linda’s Unexpected Introduction to ME/CFS
What happens when you mix a mother’s love with a clinical laboratory scientist’s expertise? You get Linda Tannenbaum, a powerhouse patient advocate who has rocked the world of ME/CFS research.
In 2006, Linda’s 16-year-old daughter came down with sudden-onset ME/CFS. It was the very definition of a sudden onset. At 8:00 a.m. her daughter appeared to be a healthy, happy, active teenager; at 8:20 a.m., she was very ill.
That’s when the Tannenbaum family embarked on the same long, arduous, frustrating journey travelled by so many ME/CFS patients. Over the next few months, they took their daughter to more than 20 different doctors trying to find out what was causing her to be so sick, all the time fearing she might be dying of something that just wasn’t being detected.
Unfortunately, even having access to her own laboratory didn’t help. “We did every test we could possibly do from our clinical laboratory…most of the tests were normal and here she was very sick,” said Linda. “I couldn’t figure out what she had myself. It was very difficult.”1
Despite her strong scientific credentials, Linda and her husband were also confronted with the same “psychological cause” theories too many ME/CFS patients have heard. At one point, their daughter was so sick that she was hospitalized, unable to get out of bed or even stay conscious. Incredibly, the doctor told them that their daughter’s illness was their fault and they should take her home and send her back to school.
Finally the Tannenbaums took her to a doctor at UCLA Pediatric Rheumatology who diagnosed her with chronic fatigue syndrome. Although that doctor was at least able to give them a diagnosis, the only thing he could offer in the way of help was treatment for pain. He then referred them to a CFS specialist at Los Angeles Children’s Hospital who confirmed the diagnosis and recommended that she go to a physical therapist for exercise therapy. Not surprisingly, she got progressively worse following each therapy session.
The Birth of the Open Medicine Foundation
Realizing that doctors didn’t seem to have the answers they were looking for, Linda did what scientists do––research. She began studying, talking to people, going to conferences and talking to researchers. What she learned surprised her and ultimately led her to establish the Open Medicine Foundation (OMF) in 2012.
I started the Open Medicine Foundation because what we saw with our daughter was nobody was working for a cure. Researchers were not talking. Nobody was sharing information. Somebody needed to do something––to step up to make this happen.
As a parent, when you have a sick child, you think, ‘Oh, somebody is researching it; the government is researching it. I’m sure there are answers. I need to find out. I’m sure that there’s more out there than I know. I need to find a doctor to help cure my daughter.’ But no. Once we…started going to conferences, started talking to other people, started meeting some researchers, we actually found out that there was nothing going on that was going to lead to a cure for this illness because the researchers that were presenting…at some of the conferences were not talking to each other after the conference. They were just standing up and giving their research projects. So we started the foundation to be able to raise enough money to bring people together to share openly.2 – Linda Tannenbaum
Patients have long been frustrated by the agonizingly slow progress of ME/CFS research. There have been many contributing factors to this snail-like pace, not the least of which is the secretive nature of scientific research.
We like to think that a medical researcher’s first concern is helping patients but too often the system gets in the way. Researchers cannot get their studies published in a good medical journal if they have shared their results publicly. Since it can take many months, or even longer, for a study to be accepted and eventually published in a journal, new findings may languish in obscurity for far too long. Sadly, when this happens, it is the patients who suffer.
This may have been the case in the ME/CFS research community––that is until Linda Tannenbaum came along. Under her calm, soft-spoken demeanor lies the heart of a fierce advocate who knows how to get things done. Her understanding of medical science, coupled with her determination to help her daughter and others like her, has helped Linda successfully throw open the door to ME/CFS research.
“Open” Is the Key Word
The basis of the Open Medicine Foundation is found in the first word of its name––Open. They embrace an open, collaborative model. In fact, they will only fund researchers who are willing to share information. The data and results of all research funded by the OMF is freely shared with other researchers on their website.
One example of how their open, collaborative research policy is helping to speed the progress of ME/CFS research is their Severely Ill Big Data Study, which was the first step in OMF’s End ME/CFS Project. Researchers got together and decided to look at the most severely ill ME/CFS patients to see if they could find some kind of signal or biomarker that stood out above the rest and might indicate why these patients are more severely ill.
Although severely ill ME/CFS patients may hold the key to unlocking many of the mysteries of this illness, they are not usually included in studies because they’re too sick to even be taken to the testing site. So this time, the researchers went to the patients. They went to the homes of 20 different bedridden patients, where they collected bodily fluids and did a variety of medical and clinical assessments. From the information collected, the researchers were able to run thousands of tests, which will ultimately result in billions of data points that can be analyzed. (The data is still being reviewed, but one early result shows evidence of metabolic defects in these severely ill patients.)
One reason this study can have such a big impact on ME/CFS research is that all of the data collected is being made available to other researchers. Those researchers will be able to easily access the data and use it to guide the direction of future research. They won’t have to spend precious time and money repeating tests that have already been done. Nor will they waste time and money pursuing avenues that have already been found to be negative in the most severe patients. Just making the data from this study alone freely available to other researchers could potentially shave several years and millions of dollars off of the search for a cure.
Leading the Search for a Cure
OMFs Scientific Advisory Board is phenomenal. It is led by Dr. Ron Davis, who is the Director of the Genome Technology Center at Stanford and is known as the father of genetics. Dr. Davis has put together a truly outstanding advisory board, which includes three Nobel laureates and six National Academy of Sciences members.
Dr. Davis has a son who is severely ill with ME/CFS, so like Linda Tannenbaum, he has a very personal interest in ME/CFS research. “We’re in this to find a cure,” Linda said, “not just to do research projects and not just to fund publications. We’re trying to find a cure and find effective treatments.”2
The first step toward discovering that cure, and a current focus of OMF research, is to find a diagnostic biomarker––a biological footprint that would provide a clear and credible way to accurately identify and diagnose ME/CFS. A diagnostic biomarker would also help researchers identify subsets of ME/CFS and measure effective treatment options.
Another top-priority focus of OMF research is finding effective treatments. In fact, when asked about the goals of OMF, Linda cited effective treatments, a diagnostic biomarker and a cure at the top of the list.3
Changing the Face of ME/CFS Research
The OMF is changing both the pace and the face of ME/CFS Research. Thanks to Linda Tannenbaum and the OMF, researchers from all over the world and representing many different medical disciplines––including immunology, virology, genomics, informatics, molecular biology, epidemiology, infectious disease, oncology, pathology, and clinical medicine––are finally getting together and talking about ME/CFS.
Last August, the OMF sponsored Dr. Ron Davis’ Symposium bringing numerous ME/CFS researchers together to sit around a table and talk about what they’re doing––not what they’ve published, but what research is currently going on. That’s almost unheard of in the scientific community, where information about research projects usually remains a closely guarded secret until the final results are formally published.
It’s likely more than just coincidence that since OMF entered the picture five years ago, ME/CFS research has made more progress and been taken more seriously than in all the years before put together. The OMF truly lives up to its motto: Leading Research. Delivering Hope.
Linda’s Message of Hope to Patients
In her unique situation as both the parent of an ME/CFS patient and a scientist, Linda acts as a bridge between the patient community and the medical research community. She understands how vitally important it is to keep patients informed about and encouraged by what is happening in research.
The most important message Linda wants to relay to patients is the fact that there truly is hope because there are people who are talking and sharing, which is really speeding up research right now. For many years patients have felt like nothing was being done, but now there really is true progress being made.
Because they understand how important it is to keep patients informed about the progress being made, the OMF actively reaches out to ME/CFS patients around the world. They are currently connected with patients in over 100 different countries. And Linda continues to travel to many of those countries to personally share her message of hope and encouragement.
ProHealth is happy to help Linda and the OMF spread their message by providing financial support as well as sharing their progress on our website, in our newsletters, which reach more than 190,000 ME/CFS and fibromyalgia patients each month, and on our Facebook pages which have more than 650,000 likes.
For perhaps the first time ever, ME/CFS patients have a legitimate reason for genuine hope––hope for effective treatments and even hope for a cure. And that hope rests on a firm foundation––the Open Medicine Foundation––under the dedicated leadership of its founder, Linda Tannenbaum.
- For more information about specific OMF research projects, visit the Open Medicine Foundation website and view the menu under “Research.”
- For OMF research updates and an inspiring message of hope, watch Linda Tannenbaum’s New York presentation from the 2017 End ME/CFS Worldwide Tour.
- To learn how you can help support OMF, go to the Open Medicine Foundation website and view the menu under “Get Involved.” (It’s important to note that OMF is run very efficiently and utilizes many volunteers. While the average charity spends 37% of donations on administrative costs, OMF spends less than 15%, which means more than 85% of every donation is used to fund research.)
Original publication available on ProHealth