Diseases We Research
What diseases do you research?
Complex chronic diseases. Right now, we are doing studies on ME/CFS, with the intention that information learned through these studies will reveal more about similar diseases that are also complex and chronic and share some of the symptoms in ME/CFS, such as fibromyalgia and chronic Lyme disease.
What is ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)?
It’s a debilitating and complex chronic disease that afflicts millions with varying severity, causing some to be bed-bound. There is much controversy over how to define the disease or whether Myalgic Encephalomyelitis is a subset of Chronic Fatigue Syndrome or just an earlier name for the same condition. Other names for it are “chronic fatigue immune dysfunction syndrome” and “systemic exertion intolerance disease.” Learn more about the symptoms and prevalence and personal impact of the disease here.
What are complex chronic diseases?
It’s a group of diseases that are complex in that they affect multiple body systems, are hard to diagnose, have symptoms that overlap with other diseases, and are often found in combination with other diseases. And they are chronic, meaning they are lifelong or long-term, lasting years. Fibromyalgia, ME/CFS, chronic Lyme disease, and multiple chemical sensitivity are just a few complex chronic diseases. Sometimes, these diseases are referred to as neuro-immune diseases. People with these diseases often also have irritable bowel syndrome, migraine headaches, postural orthostatic tachycardia syndrome, anxiety, and depression; which contributes to the complexity.
Research - General Information
How far along are the studies?
In the Severely ill Big Data Study, the samples have all been collected and they are now being tested and analyzed. In the Metabolomics and Genetics Study, the patients have been selected and blood draws are under way.
Can I take part in your research?
We wish you could, but that’s not possible at this time. For all our current studies, research participants have already been chosen from well-defined groups with the help of expert ME/CFS clinicians. However, in the future, we may need to recruit more patients or collect more patient data. Please stay informed of this possibility by signing up for our newsletter.
How can I find out the latest about your research?
What is the End ME/CFS Project?
It is a long-range research and funding plan that includes many studies to be done and milestones to be reached. The ultimate goal is to find effective treatments that will restore ME/CFS patients to active and productive lives and reveal more about other complex chronic diseases. Read more about the End ME/CFS Project here.
Are you going to test for enteroviruses in the ME/CFS Severely Ill-BIG DATA Study?
Response by Dr. Ron Davis: “We are going to test for enteroviruses. It’s not on the list because we haven’t made the probes yet. The probes are specific for the enterovirus, and it requires a fairly large amount of design work as we are creating a new testing technology. Currently and in the past, people have done a single-tube assay for one type of virus based on which one they suspect. We are designing a single-tube assay with probes for all known viruses all at once. This new technology will make it easier, faster, and cheaper for doctors and researchers to test each human sample for all known viruses at about the same cost as the current ones that test for only one type of virus.”
Research - Expected Results and Impact
If the diagnostic tests ends up cheap enough, won’t this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?
YES! That’s what we think.
How soon can we expect diagnostic tests and effective therapies from this work?
Predictions of time in research are risky. The unexpected is always possible. With so many variables and possible twists and turns, we wouldn’t dare estimate when treatments and diagnostic tests will be broadly available. But, we’re working as fast as we can. We keep people informed through our newsletter and our News and Announcements section of the website.
Are any of the tests being done in the Severely ill-BIG DATA Study available for patients in general, especially those that Dr. Davis said are abnormal in the patients he’s tested?
The ME/CFS Severely Ill-BIG DATA Study has so many different tests that some are available in clinical settings. But many are only used in research. We know you’re eager to get answers; we are too. But it’s too soon to use the preliminary results for concluding a disease process or for indications of treatments. Of course, we’ll keep you informed through our newsletter and the News and Announcements section of our website.
Will treatments need years of clinical trials before patients can use them?
We hope not, but we don’t know yet. There are possible avenues that may prevent a long wait. The key is that our research is directed toward identifying the fundamental problem in patients’ biochemistry, which we expect will indicate targeted interventions for testing.
Research - The Scientists
Who is doing the day-to-day science for your research?
Under the coordination of Ronald W. Davis, PhD, our ME/CFS Scientific Advisory Board director, we have an actively growing group of scientists, clinicians, and lab technicians working very hard on this disease and meeting once a week to share results and plan the next steps.. They are screening patients, doing the tests, and analyzing the results. Some are with Dr. Davis at the CFS Stanford Research Center at Stanford University, which is part of the Stanford Genome Technology Center. And some are from other institutions and companies; we choose scientists who are already experienced in their area of biology research to do the tests because they are the experts. See the list here.
Are others collaborating with you – including internationally?
Many world-renowned researchers are collaborating with us, including researchers outside of the United States. We are currently partnering with researchers in Australia, Canada, Germany, Norway and Sweden.
Will you share your data?
We’re eager to share the data from the End ME/CFS Project, and it’s a key part of our “open medicine” model. Our ME/CFS Scientific Advisory Board director, Ronald W. Davis, PhD, will make available all the clinical data for other scientists to view, even before the results are published, in order to speed up the science. Along with our collaborators, he’s creating specially made computer computational software to make it easy to download the data, which consists of billions of individual data points.
Funding and Costs
Won’t the NIH (National Institutes of Health) fund this work?
Frustratingly, the NIH has for many years provided very little funding for ME/CFS research – less annually than for hay fever—and has twice turned down Dr. Davis’s ME/CFS applications on the grounds that they have no hypotheses, despite the fact that so little work has been done that research is still in a “discovery” phase where a hypothesis would be inappropriate. As Dr. Davis says: “When we launched the Human Genome Project, we did not have a hypothesis. It was incredibly successful, and it’s totally revolutionizing medicine right now.” What our foundation aims to do is generate enough in private donations to speed the project through this discovery phase and to the point where the NIH will fund it on an ongoing basis.
How much money do you need?
We need at least $5 million a year for the End ME/CFS Project. This is cutting-edge research using technologies at the frontiers of bioscience. Even with several laboratories offering their tests at cost, and many researchers providing their help for free, this is an expensive field. But we’ve already raised $5 million since 2012 from a mix of large and small donations, and donations are accelerating. With your help, we can do it!
I can’t afford to give much. How can I help?
There are millions of ME/CFS patients in the US and worldwide and, with such large numbers, even small donations add up. We appreciate them all. They also inspire larger donors to come forward, and we’ve benefited from a number of very generous donors. But you can also help by spreading the word about our research and the need for donations. Many people—even patients—aren’t aware that there’s ground-breaking biomedical research into ME/CFS to which they can donate. You can also plan a FUNdraiser. We make it easy.
Are donations to your foundation tax deductible?
In accordance with IRS regulations, yes. Our foundation is registered both in many states and with the US Internal Revenue Service as a 501(c)(3) nonprofit charity. You can read our determination letter, granting us charity status, here. Learn more about the variety of ways you can donate funds or assets to further the research we’re doing.
How much are your administration costs?
For fiscal 2017, our administration costs were 10% of money raised. We are using many cost saving and efficiency strategies to make your donations have the biggest impact.
What are you doing to keep down costs?
Everything we humanly can, short of affecting the research. It’s a huge help that our ME/CFS Scientific Advisory Board director, Ronald W. Davis, PhD, and others on our amazing Advisory Board are held in such esteem among scientists, bringing much support for the effort; such as donating their time or providing their services at cost or at substantial discount. We’re also using labs and technicians already experts in doing certain tests, so we don’t have to train or purchase equipment for all the tests.
What are the limits on the “Indirects” when doing research with a University?
It is the policy of Open Medicine Foundation that “Indirects” are capped with a maximum of 8%.
What was the purpose of forming the foundation?
When we formed, our main goal was to identify research studies (of complex chronic diseases) that needed to be funded. However, within a couple of years, we brought on world renowned scientists and formed our own research plan, the End ME/CFS Project. Now, we fund studies that we initiate or others initiate because they fit with the goals of this plan. You can read our Mission and Vision Statement here.
How old is your organization?
The Open Medicine Foundation nonprofit charity was formed in 2012 from individuals who have a history in other nonprofits or in research and clinical care of complex chronic diseases.
How are decisions made?
Our foundation, as is customary for 501(c)(3) organizations, has a board of directors and CEO/president, Linda Tannenbaum, making the administrative decisions. Additionally, scientific decisions are made by Ronald W. Davis, PhD, in consultation with our ME/CFS Scientific Advisory Board made up of scientific experts.