|True Reasons for Hope and Encouragement: NCF
By Alan Cocchetto
The National CFIDS Foundation Inc. (NCF) is the fastest growing ME/CFIDS organization in
the US. Our sole mission is to learn, through appropriate medical and scientific research efforts, the true nature of the
disease so that we can one day defeat this functionally oppressive and devastating illness for our patient community.
This year, the NCF will fund scientific research totaling $ 100,000. This money, given to us through generous
patient donations, various fundraisers, and benefactors, goes 100% to research and to research only! What other
CFIDS organization can say this? Unlike other organizations, we have NO paid positions, NO paid CEO's, NO paid
staff, and virtually NO overhead! We are a totally volunteer organization made up of dedicated people with one
common goal in mind - to eradicate CFS/ME worldwide. All our volunteers offer their time and talents willingly
because they each recognize the injustice of this disease and they are determined to do their own part toward its
What else makes us different? The research approach, taken by the NCF, is truly a dynamic
and responsive one! Let me explain. Though we receive numerous research grant application
proposals, our primary purpose has been to self-direct the scientific research. In other words,
through exhausting reviews of the current world-wide research efforts on this disease, we have
emerged to propose new research to scientific researchers who are the world's foremost experts
in their respective fields of science. Our foresight has allowed us to approach researchers who
are "outside" the CFS/ME paradigm to assist us in furthering our understanding of the disease
and to "leap-frog" current knowledge and scientific technologies. This allows us to dynamically
respond in a manner that others have not been able to accomplish in the past. It also allows us
to conserve our limited research monies and to maximize our return on scientific investment.
This approach has allowed us to uniquely respond in a timely fashion to tremendous scientific
opportunities that exist worldwide!
But is this approach beginning to pay big dividends? You bet! In the months ahead, we will
be making major announcements about all our research findings to date and where the many
kind patient donations have gone. You will also learn that some of our research efforts were purposefully kept quiet
to protect the work and time of the current researchers retained for our research grant projects. You will learn more
about these research groups, their efforts, and their results. Our feelings are that this has been absolutely necessary
due to the fact that what we are now learning about the disease and the disease model represents perhaps the most
significant findings in the last decade of CFS/ME research!
So we ask you to please be patient, though it is difficult, because the affirmation, validation, diagnostics, and
therapeutic implications are coming as fast as we are able to push all the researchers involved! What we truly know
is that we are at the beginning of a new era in this disease and the months ahead should provide ample proof of our
efforts to provide the necessary data that should assist each PWME/C with the validation and dignity they
rightfully deserve. It has been a long road but be prepared - for there is no doubt, the tide of this disease is turning!
The National CFIDS Foundation* 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606