I'm not set up to take donations for this blog, but I would urge my readers to make donations to support research. With CDC/NIH giving True CFS short shrift, and polluting their research pools with psychiatric patients who don't actually have CFS, the bulk of the useful research into post-viral CFS has been paid for with private dollars. Your contribution can help get a million Americans the cure that will allow them to go back to work.
[As Craig points out, there is no online donate button at the CFS Research
Foundation website. But one can donate online at
http://urlcut.com/donatetocfsrf
Here i.e.
http://www.cafonline.org/apps/charities/charityprofilelink.aspx?MainId=64337&SubId=146003&Source=CAF&CharityName=CFS+Research+Foundation .
There are, of course, other groups in the US, UK and around the world raising
money for research. Tom]
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http://www.cfidsreport.com/News/08_Privately_Funded_CFS_Research.htm
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Private Funding: Opportunities for assisting CFS Research are Numerous and
Diverse
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(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 for CFS. 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 scientific understanding of
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.
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, but they have been around since the early 1990's, funding a
wide variety of projects. M 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. The 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 inSanta Barbara California, the HHV-6
Foundation was founded in 2004 by Annette Whittemore and Karen Loomis to
"encourage scientific exchange between scientists and to provide pilot grants
for promising scientific and clinical research". The foundation is focusing
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. However, 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 www.cfids.org.
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