The CFIDS Association was founded in 1987 and our first dollar was invested in research. Over the first 20 years of service to the community, you helped us fund $4.6 million in research grants, host three research symposia and support numerous conferences and meetings. Over those first two decades, our approach to research followed a traditional model and the studies we funded contributed to a knowledge base of 4,000 small studies.
In 2007, we carefully evaluated the gaps and opportunities. Three important themes emerged from this review:
• The literature was essentially a collection of “one and done” studies with few attempts to validate early observations or extend findings. These had limited benefit for improving patient care.
• Studies were hampered by the use of multiple case definitions and the lack of standardized ways of collecting data about patients or samples from them.
• Research priorities were driven by “in vogue” hypotheses, with few organized efforts to connect the dots or link findings from one study to another.
We knew there was a better way to approach research, and so did you.
In 2008, we added a full-time scientific director, Suzanne D. Vernon, Ph.D., to our staff and we asked you to help us:
• fund innovative studies;
• leverage existing data;
• strengthen international collaborations;
• recruit new talent to the field; and
• expand communication among scientists to share ideas, knowledge and data.
You came through and helped us accelerate the pace of CFS research. Now we want to transform it.
During the week of Nov. 28, we posted two reports each day on Research1st that describe how we have delivered on the promises made in 2008 and what we propose to do next with your participation and support through THECatalystFUND. We also introduced you to some of the Catalysts who are inspired by the Association’s research program and are helping build THECatalystFUND to support the next phase of our research program.
It is an exciting and pivotal time, with many opportunities to seize. We hope you agree!
“Return On Your Investment” Series: Updates on the Six Projects Funded by the CFIDS Association
Dikoma Shungu, PhD: http://bit.ly/sTYFnm
Marvin Medow, PhD: http://bit.ly/umPtH2
Kathleen Light, PhD: http://bit.ly/uo6mIR
Sanjay Shukla, PhD: http://bit.ly/uDPrQI
Gordon Broderick, PhD: http://bit.ly/uxmTBp
Bud Mishra, PhD: http://bit.ly/vbG1K2
Hi-Fi Sci-Di: Dr. Suzanne Vernon Orchestrates High-Fidelity Research: http://bit.ly/sbXCmG
Looking to the Future: http://bit.ly/vcWAkd
Newsworthy Highlights of 2011 (So Far): http://bit.ly/tsRcya
Transforming Research: A Slideshow: http://bit.ly/tE0PTP
We invite you to become a Catalyst and to help transform research and speed progress for better patient care. For a limited time, through a challenge issued by the McGrath Family Foundation, donations made through our secure online portal will be tripled.
Gifts of every size are needed to reach the $2 million goal and will be gratefully recognized as part of The Catalyst Fund. Thank you for your generous support!
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Though this is an exciting and innovative approach to funding, particularly with the McGrath family multiplier factored in, I am unable to contribute to this very vital cause. The reason? I am severely affected by CFS, unable to work at all and living on $919 a month SSDI. It doesn’t cover necessities of life, let alone leave wiggle room for donations. A proposal: You do what is necessary to get me well enough to work again and I will happily fund this effort. Most happily!
Sharon
All very exciting research. Thanks for your efforts.
I can’t wait until all this translates to something better than my GP asking if I’ve tried CBT or “exercise”.
With the recent success in Norway, can the CFIDS association consider funding a Rituximab study or something similar?
Research is so achingly slow (I know as I have done research myself). We (sufferers) might have to wait another 10 years for useful treatment even if we do start looking at this hopeful drug in North America today.
Hi Gail,
We share your interest in advancing a study of rituximab here in the United States to follow-up on the promising results of the phase II study in Norway. The challenge for us will be the cost of such a study. The cost of rituximab and the larger family of monoclonal antibodies to which it belongs is quite steep. Our current funding award limit is $100,000, which would make for a very small study unless it was co-sponsored by the manufacturer. There are other groups here in the states that are interested in conducting such a study, so it may be a great opportunity for a collaborative effort.
Why not take blood from those of us who have CFS for a long time? I’m approaching 24 years. Why should my age affect the results? I am 70. It is an advantage to the study to follow what happens long-term as a person ages. I have Primary Immune Disease, have had breast cancer, and I’m Bi-polar. These are conditions that can be sorted out and used statistically. Keeping these conditions out of your samples may cause the studies to lose valuable information.
I know about experimental design; I can design very good studies, but the plain vanilla population you are researching is costing you information.
Quit looking for the “one” cause, this is a multivariate disease. Go back over all of the the blood samples you have, widen the scope of your research by asking for blood samples from those of us you have eliminated in the past, and then mine it for all of the information possible.
You might surprise yourself.
Anita
Hi Anita,
One of the attractive features of the SolveCFS BioBank is that we are able to customize subject selection and sample collection for the needs of different studies and investigators. The study that we collected blood samples for last year had very strict entry criteria that limited age range, but future studies may have very different criteria. The registry portion of the BioBank enables us to consent and collect clinical information and medical/medication history information from people who might not “fit” standard research criteria, and then “sort” into different groups. We have approved one study so far that is using all the clinical information submitted by SolveCFS BioBank participants. Our approach is not biased to finding a single cause.
I agree with a few sufferers whom you’ve already published their questions/answers. I feel like any research beats the “nothing at all” the CDC/NIH were doing for so many years. Most of us long-termers” have a lot to contribute, and yet although Dr.Dan Peterson send my blood and tissue samples to some reserchers in the early 90′s, no one is asking me for any samples now and I am 64 years old, with 23 of those years spent ill and unable to contribute to research. I can’t even imagine PWC’s to be able to work and contribute to research. I certianly can’t and have been on disability for years from my teaching career thatwas cut short. How about us. One question. Why oh why are the reeartchers you show always PhD’s and not MD’s specializing in one of the top diseases of women??? We don’t need PhD’s unless they are related to genetic and gene assessments done on atcual patients. It’s a long time to wait for just a few doctors to once again step forward and work on our disease. It doesn’t just go away, and never will without proper diagnoses and treatment.
Hi Susan,
PhDs spend their training years learning, understanding and using the scientific method to study and solve complex problems. Their expertise isn’t limited to genetics and gene associations. You’ll find PhD scientists involved in very varied approaches to biology, from basic science (like cell biology) to physiology (like immunology) to fancy computational applications (like metagenomics). Physicians (MDs) spend their training learning how to apply what science has shown for the benefit of the individual patient. There are some professionals who straddle both worlds particularly well, but it’s challenging to do both. Translational research is aimed at going from “bench to bedside and back” to quote a catch-phrase. Another name for something similar is “personalized medicine.” We’d all benefit if there were more of each type of “doctor” involved in research and patient care, but I hope you won’t begrudge the PhD scientists who have dedicated some or all of their professional lives to understanding CFS!
I have never written in before, but was moved to do so after reading the messages from those of us who are such long term suffers. Like Anita, I have had CFIDs (diagnosed as CFS) since 1980. I am now 67. Thats 31 years. I also have chronic IBS, worsening immune response and have had breast cancer. I am not on disability because I was too proud and tried to “push ” through. Eventually I couldn’t work at all. In reading some of the studies, I sometimes feel I am insignificant since I may be getting too old to ever benefit from any of the research.
Also, my husband and I are both financial contributors to CFIDS, and I would like to do more . I am too sick most of the time to do much, but I am wondering if there is any already prepared material(ie letter and funding process) which I could use to send out to an email list with a cover letter. I just don’t have the energy to do it myself.
Thank you.