Private Funding: Opportunities for assisting CFS Research are Numerous and Diverse
(Craig Maupin at http://www.cfidsreport.com) – April 2008 - When people think of medical research, they often think of government agencies. In the United Kingdom, the Medical Research Council (MRC) funds a large amount of medical research. In the United States, the Centers for Disease Control and the National Institutes of Health also fund medical research. Most mainline advocacy for chronic fatigue syndrome (CFS) has often focused on increasing the funding levels at these agencies.
Yet, government funding is only a small portion of the total research monies spent on medical research. As of 1995, the top twenty-five charitable foundations for a variety of diseases in the United States funded a healthy total of 1.2 billion dollars of grants (ref: aaas.org). In the United Kingdom, the Association of Medical Research Charities estimates that its members spent roughly £791 million on medical research in 2006/7. These private efforts have produced remarkable results. Privately funded research has delivered a staggering number or research breakthroughs, from breakthroughs for diabetes, to Parkinson’s Disease, to cancer.
Chronic fatigue syndrome is developing a network of foundations and charities focused on privately funded research. Unbound by politics or agency directives, these foundations are free to pursue a wide variety of research projects. In fact, many advocates believe that privately funded research is a must, if understanding of the biology of CFS is going to progress. According to Dr. Neil Abbott of ME Research UK, biomedical research for CFS, a predominantly woman’s illness, will be unlikely to occur in the U.K without private funding. Abbott says that Freedom of Information Act requests have yielded evidence that the MRC rejected 30 biomedical applications for CFS research.
The good news is that opportunities for families, friends, and communities of those who suffer from CFS to fund private research abound. Several foundations in both the United Kingdom and the United States are dedicated to CFS research, focusing on identifying biomarkers and increasing scientific understanding about CFS. In fact, these foundations are now considered by many clinicians, advocates, and researchers alike to be involved in the cutting-edge of CFS research.
The CFS Report has compiled a list of foundations that sponsor private research. These foundations have contributed to strides in CFS research. Here they are:
1. The CFS Research Foundation -- The CFS Research Foundation is best known for funding the research of a multidisciplinary team led by U.K research Dr. Jonathan Kerr. The foundation has been around since the early 1990’s, funding a wide variety of projects. Kerr’s team, to date, has already produced remarkable results. In April 2008, Kerr published the first-ever study looking at the complete genetic picture of people with CFS. He found a distinct genetic profile for CFS, as well as 7 unique subgroups that merit further investigation. The choices made by the foundation’s scientific advisors and directors have, thus far, been excellent.
The CFS Research Foundation has a simple, yet well-conceived, website (http://www.cfsrf.com). At their site, information is presented on how donations can be made to fund Kerr’s research, as well as any other applications for CFS research that the foundation may receive. The Foundation lists its scientific advisors and directors. Any research findings that result from their grants are also posted. However,he donation forms are not geared toward assisting U.S. or international donors, and the foundation currently lacks the ease of online giving through credit card or Paypal.
2. ME Research UK. The United Kingdom is also home to our second research foundation on our list, ME Research UK. ME Research U.K not only funds research, but they actively stimulate interest in CFS research within the scientific community by disseminating information and holding conferences. The foundation benefits from wise, savvy and consistent leadership.
ME research UK has a website full of information on CFS/ME and their efforts. http://www.meresearch.org.uk/ The website also features many ways for donors to donate, featuring secure online donation in international currencies.
3. The Whittemore Peterson Institute - Our third foundation hails from the United States, where announcement by the Nevada legislature of a new research center in the heart of Nevada’s Reno countryside produced waves of optimism in the CFS community in 2007. The research institute, headed by philanthropist Annette Whittemore, whose daughter suffers from CFS, aims to provide funds for new research and stimulate interest in CFS among physicians and researchers. Well-known CFS clinician Dr. Daniel Peterson and a docket of advisors assist the foundation in steering research into productive areas of inquiry. The Whittemore Peterson Institute has a website that features easy donations by credit card or Paypal in denominations of U.S. dollars. The link of for the Whittemore-Peterson Institute is as follows. http://www.wpinstitute.org/
4. The HHV-6 Foundation -- Based in Santa Barbara California, the HHV-6 Foundation was founded in 2004 by Annette Whittemore and Karen Loomis. The foundation's goal is to “encourage scientific exchange between scientists and to provide pilot grants for promising scientific and clinical research”. The foundation focuses its efforts on developing better tests for HHV-6, a virus that may play role in CFS. Their website, http://www.hhv-6foundation.org, offers complete information on HHV-6, their directors and scientific advisors, and relevant research. The site also features a online donation form, featuring easy donation via Paypal account.
5. The CFIDS Association of America - Final on our list is the CFIDS Association of America. The CAA has mostly been known for its political advocacy, requesting increases in funding from federal agencies charged with medical research. However, the CAA recently hired Dr. Suzanne Vernon, formerly of the Centers for Disease Control, to head up a privately funded research effort in the U.S. At this juncture, little is known about Vernon’s philosophy toward CFS, and the Association’s past support of the CDC’s stress-based model for CFS is controversial. However, should advocates see research funded by the CAA that falls outside the typical research funded by the CDC, the CAA could be a revived player, given Vernon’s stature, abilities and contacts. The website for the CAA is cfids.org.