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Fellow PWC's Listen-Up!

by Alan Cocchetto, NCF Medical Director

       A couple of weeks ago, my wife and I went to visit a fellow, long-term PWC from our region. The patient was in hospice…..yes that's right, hospice! This patient was one of Dr. Paul Cheney's and Dr. David Bell's patients. Let me tell you that I have seen with my own eyes what this disease is capable of doing and it's a human tragedy. Though I may be preaching to the choir here, words cannot adequately describe the horror of this illness. I can't help but stop to think about the many PWME/C's who have phoned me over the years with all their personal stories….patients who were on feeding tubes; patients who had been bed-confined for years; patients who hadn't left their residence even to go to see a doctor because they were too ill to do so; patients who had been repeatedly taken to the hospital by ambulance; patients who had numerous blood transfusions; patients who had constant seizures; patients who had no I.Q. left; patients who had undergone bone marrow biopsies; and the list goes on and on! Does this sound like fatigue and malingering to you? This disease does not tolerate such naive thinking! Unfortunately however, the continued suffering associated with this disease seems to never end.

     I'm here to tell you that the time to join forces with the NCF is now and not later! We have developed associations and collaborations with numerous outstanding medical scientists…..we have noted ME/CFS specialists who have openly stated to us that we have cracked this 'nut' wide open…..we have half a dozen world renown virologists who believe 'this is it!' With enough funding, we hope to begin and end this work in 2004.   If that isn't enough, look at our scientific track record in the last couple years regarding our NCF Research Grant program: HHV-6A/B antiviral testing, CFS coagulation studies, the DeFreitas HTLV-II study; the Ciguatera toxin study; the "what is the Ciguatoxin epitope" study; the amyloids in CFS study; and the STAT1 studies.  The majority of this research work had been funded since  Dr. Yoshitsugi Hokama's ciguatera announcement in Okinawa in November of 2002. Barely one year has passed and look where the NCF is scientifically, what we have done, and how far we have come! The NCF is contributing to the ME/CFS knowledge base in a totally new and substantial manner and it is doing so in a dynamic fashion. We are quick to respond because there are no alternatives! For those PWC's who are critically ill, time is of the utmost importance. We must never 'whitewash' this disease. It is what it is - a tragic illness capable of stripping everything away.

     Here at the NCF, we are ill patients working for other ill patients looking for major medical answers in a logically, fast-tracked way. We have a different vision because we have engaged our own unique compass and we have chartered our own scientific course. Many physicians and scientists are now joining our ranks and our patient membership continues to rapidly climb. If things go as planned for us, and we expect that they will, the NCF will out-spend the CFIDS Association on scientific research grants for 2003! How is this possible from a grass-roots based operation? The NCF is built on scientific truths and scientific integrity. Our scientific foundation is very strong. We know all too well that our blood will never lie nor does it care about the politics associated with the disease. People are taking notice of what we have been accomplishing and have been backing us with their donations that have gone directly to funded research. The PWME/C's I've described above can't go to their legislators or to Washington to lobby. They are far too ill. They are just trying to survive as best as they can day by day. For us to truly impact their quality of life, they need solid scientific answers and desperately needed directed medical therapies. Our belief is that this can only come about by identifying the 'culprit' explicitly and then apply this knowledge to determine appropriate drug intervention.

     Our goal is to "get out of this business" by proving the appropriate medical science once and for all. Let there be no mistake about it, a line is being drawn in the sand. No longer will there be 'gray hats' as masterfully described in Osler's Web. The scientific evidence is where the true answers are….not in Washington, not at the CDC, and not at the NIH. Let's face reality, people, these agencies have had their time "at bat" and now it's our turn. And if you think that a group of very determined and dedicated PWME/C's, along with some truly outstanding and gifted researchers, can't pull this off…..think again! After all, these are the dreams that true miracles are made of.

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