| President's Message by Gail Kansky During the past months, much of the world's attention has been focused on SARS. Another modern scourge, AIDS, was addressed by the U.S. Centers for Disease Control and Prevention (CDC) when they issued new guidelines. These guidelines attempted to address the lamentable but all too true fact that, more than 20 years into the infection, there are still 40,000 new infections in this country alone from AIDS. Fully one quarter of those that are HIV affected don't know it, increasing the chances of spreading the syndrome. Typically, the CDC's proposals did not come with any new proposal for funding. Once again, just as with ME/CFIDS, the CDC falls far short in their challenging task. Does this discourage us? No. We are not counting on the CDC for helping with ME/CFIDS. By expecting nothing from the CDC, we have not been disappointed. After all, did Dr. William Reeves announce the most significant finding the CDC has made to date? Rather than going publicly with such important information, he chose to bury it in such an obscure medical journal that it took us months to get a copy of it! Reeves gives warm and fuzzy interviews touting what the CDC can do in The CFIDS Chronicle, but when the CDC actually found something that should have made headlines in the media, they bury it to keep this illness controversial. After more than 20 years of dealing with this illness as patients and caregivers, we have learned not to expect help but to take the initiative ourselves to seek out the researchers that will help unravel the complexities of this illness. We have already, long before publication, handed this new information that the CDC and Reeves chose to keep as quiet as possible to researchers that care. Reeves talks about what gene research can do (as does Dr. Suzanne Vernon) but at the same time the CDC hides what they already know! These are months that are stolen from patient's lives in a study that was published last year! There is no excuse for the CDC's actions but we are not surprised by them. We have clawed and fought for answers and have begun to, at long last, begun to bear fruit. We work on a shoestring and yet have made more progress than others who boast of spending millions. We seek out the researchers we need to connect the dots for us and they are, in turn, grateful. In return, we applaud their dedication to truth. They understand that we are patients and we are interested in only real answers that can lead to restoring our lives instead of the existence we are forced to live with. We aren't interested in fame or fortune. We're interested in real science, real answers, and real treatments that will follow only when the cause is exposed. The pathology department at the John A. Burns School of Medicine at the University of Hawaii are hard at work tearing apart the chemistry of what turns the test for ciguatera toxin so high in ME/CFIDS patients. Before your fall issue arrives, publication of their paper in the Journal of Clinical Analasis will be a reality. While it may seem they've taken a long time to do this, we must remind ourselves that they began only last January! When they have completed this, we intend to fund them once more to find out how to block this from doing so much damage in our bodies. We feel that we are closer to answers than we have ever been before. Meanwhile, we have been in touch with other researchers that we feel can be trusted to help with other parts of the cause so that results can come as soon as possible. When we know of just one thing that could help, we will let you know! However, this is a very complicated illness and we have to connect all the dots...but we are already well on our way. For those new members who have just joined our Foundation, click here for the testing protocol for ciguatera toxin. For those who have already been tested, we know you're impatient and have every right to be. Too many years have already been wasted waiting for real answers, but the time is coming. It can't come soon enough for any of us but we want to find the entire answer so that we can accomplish our goal to be able to go out of exitence because we no longer have a reason to exist. When you get your results back
showing you are positive (we're still waiting to hear |
The National CFIDS Foundation
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