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NCF Research Update - Winter 2006

By Alan Cocchetto, NCF Medical Director 2006

Just how far has the NCF's (National CFIDS Foundation, Inc.) research advanced and how soon will this information be released? As Medical Director, I am frequently asked how close are we to "real" answers regarding this disease and how soon will this information be forthcoming. I think that a week doesn't go by that I don't try to answer this question for someone somewhere and rightly so. To all who suffer with CFIDS, the answers can't come soon enough.
Since the Super Bowl just aired a few weeks ago and now that the Olympics are on TV, let me borrow a couple of phrases from these to apply to my answer to this question and then let me extrapolate somewhat on this as well. The NCF's research has moved far enough down the playing field to be considered "in the red zone" in football terms. For those who are not football fans, the "red zone" is the offensive area just before the end zone. In other words, we're ready to score! Of course some would say that based upon where we are research wise, we have already moved into the end zone! Let's face it we all want a touchdown scientifically speaking because we believe this is one of the few things that will have a major impact on this disease worldwide.
A couple of years ago, a CFIDS patient was kind enough to send me a book titled "The Structure of Scientific Revolutions" by Thomas Kuhn. Dr. Thomas Kuhn was a professor at MIT and he wrote what is considered to be one of the hundred most influential books published since World War II. Kuhn's book provides an important view of the very nature of science and its ongoing evolution. He focuses on the processes involved with the development of new scientific theories that have occurred throughout history. Kuhn goes on to further explain the differences between normal science, scientific discoveries and paradigms. In particular, new scientific discoveries lead to scientific theories that can cause crises within the scientific community. These particular crises can then lead to a scientific revolution that will potentially change the way the world views a particular subject and what is referred to by Kuhn as a paradigm shift! In Kuhn's own words "Paradigms gain their status because they are more successful than their competitors in solving a few problems that the group of practitioners has come to recognize as acute."
Kuhn's own work best describes what the NCF has managed to accomplish. The NCF has (1) Determined the most significant scientific facts, (2) Matched scientific facts with theory and (3) Will fully articulate its paradigm theory! Paradigm articulation, as you will see outlined in future Forum issues and placed directly on our website, has taken a Herculean effort, immense creativity, as well as ingenuity to bring scientific theory and nature into closer agreement with one another. There have been a great many technical challenges that, as you can imagine, have had to be overcome. Some continue to be a work in progress! One thing is for certain however. Our world is beginning to look much brighter than ever before.
Let me explain further. The NCF's primary mission has always been to clearly and concisely focus on the cause and the cure for CFIDS. Though our Research Grant Program was only formally initiated in 2002, it acts as direct proof for our desire to end the longtime suffering of patients worldwide. Though the NCF has provided over $ 325,000 in grants to medical scientists, our vastly different approach in orchestrating as well as executing our research plan is what truly sets us apart from the research efforts of others in this same field. The NCF has believed that this approach to research is far more focused and interlinked than the current "shotgun" approach employed by others.  As such, the NCF expects to arrive at its scientific destination sooner, with greater precision and at a greatly reduced overall cost compared to others in this same field.
Limited financial resources have not deterred the NCF from adopting a unique research model which allowed us to provide cutting-edge research for a fraction of the normal costs. This enabled the Foundation to achieve much greater reward-to-risk ratios. In addition, this also provided us with a research approach that allowed us to "leap-frog" currently limited medical views, principles and practices. The basis for such an approach is exemplified by the following characteristics employed by the Foundation to date and utilizes (A) Extensive and intimate knowledge base for the disease based on long-term patient data, (B) Deployment of evidence-based medical techniques, (C) Use of disease profiling methods to assist in providing "disease fingerprints," (D) Exploitation of disease mechanisms and (E) Orchestration and research execution that is self-directed.
The NCF had determined early on that it must orchestrate its own research efforts. To do so successfully has required extensive time and effort on its own behalf. Furthermore, there has been no substitute for this primary driving force of the Foundation. There are no salaries, no egos, no fame and no fortune but just a truly humble desire to complete its mission to move the scientific ball way down the field of knowledge for all those who are seriously ill worldwide. As the Olympic mantra states "Passion lives here!" This perhaps best describes the sincerest efforts of the NCF on behalf of patients worldwide. It really is that simple!
Thus, we sit here poised at the beginning of a major scientific paradigm shift. Look for upcoming changes to our website as once the plan moves into motion, we will be releasing a great deal of information via the internet. Our position will be very carefully articulated scientifically and will include supportive research data. As Kuhn eloquently pointed out in his book "Probably the single most prevalent claim advanced by the proponents of a new paradigm is that they can solve the problems that have led the old one to a crisis.  When it can legitimately be made, this claim is often the most effective one possible....

Claims of this sort are particularly likely to succeed if the new paradigm displays a
quantitative precision strikingly better than its older competitor." Here's to a new
CFIDS revolution!

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606