NCF Banner



By Robert Huntington

From Summer 2010 Forum

In 2002, researchers at the John A. Burns School of Medicine (University of Hawaii-Manoa) found nearly 100% of patients diagnosed according to the Fukuda Definition of 1994 or more stringent diagnostic tests were positive to the assays that are considered "the gold standard" for biomedical groups worldwide testing for the toxin. Using healthy controls for a comparison, those positive to the ciguatera assay were nearly 0%! By late 2002, the lead researhcer, Yoshitsugi Hokama, PhD, annouced this astounding discovery at the international toxicology conference in Japan. Although some newspapers in Hawaii carried the exiciting news, our government was silent. Publication followed in early 2003 in the Journal of Clinical Laboratory Analysis (17:139), a medical journal for researchers that only publishes scientific work that is able to be successfully replicated from the submitted paper. The authors on that paper included researchers from the medical Department of Pathology as well as some "CFS experts", Derek Enlander, M.D. and Edward Jordan, M.D. along with the medical director of the National CFIDS Foundation, Inc., Professor Alan Cocchetto.

Did our government ignore this despite Dr. Hokama being their federal government's expert advisor in this area? No, not really. Proven science is fact. There's no need to either agree or disagree. You can't. It's fact and that's it. It's like arguing about whether the sky is falling or if a person is alive or dead.

But to recall some history, later in 2003, during a meeting of the federal Chronic Fatigue Syndrome Advisory Committee, the head of the CDC's CFS division, William Reeves, M.D., was asked what he thought about this exciting development found. Reeves stuttered and stammered and grew noticeably red. He finally said, "I find it… interesting." Of course, that's political speak that says nothing.

The CDC. the NIH and the FDA contined on with their "CFS" work, ignoring all the replicated science found worldwide. A few years ago, the FDA's Director of Food Safety was Dr. Douglas Park , had joined Dr. W. John Martin in his work before he held that position. Martin and Park said they had found a "CFS stealth virus". It was the NCF's medical director who found what they were really using to test the patients for the "stealth virus" in a patent: the ciguatera assay! The NCF continued to fund these researchers and the researchers also went on to receive a $1 million grant from the NIH to fuarther their work. They had already taken it apart molecule by molecule and found it matched ciguatera yet there were tiny, tiny differences which led them to call it an epitope. They found it used the sodium pathway which explained why CFIDS/ME patients had such adverse reactions to many anesthesias and the NCF issued an anesthesia protocol based upon this science. When they understood how misunderstood how patients were mistreated worldwide, the medical school opened up testing for all people with the diagnosis. Within months, a second paper was published by the international Journal of Toxicology (22:4.2003), "Chronic Phase Lipids in Sera of Several Chronic Diseases Reacting with MAB-CTX (Antibody to Ciguatera)". Again, the authors included some from the NCF. Our government stayed silent. In 2008, the researchers from Hawaii found the test was a biomarker for all autoimmune diseases.

A long seven years since the publication, the person who is now the Director of Food Safety at the FDA and has a background as a ciguatera expert, Robert W. Dickey, and another, Steven M. Plakas, who was with the Gulf Coast Seafood Laboratory, published a review entitled "Ciguatera: A public health perpective" in Toxicon (2009, 10:1016). It began, "Ciguatera fish poisoning is a food-borne disease…" and went on to describe how dinaflagellates produce the toxin and how the toxins "produce a complex array of gastrointestinal, neurological and cardiological symptoms". Of course, the article pointed more toward ingestion of toxic seafood as a percursor yet it seems more than apparent that the toxin is already in our food supply and does not have to come from eating fish. The article referenced the work as reacting with "chronic fatigue syndrome, chronic ciguatera fish poisoning, hepatitis B and cancer patients suggesting a causal link". The references included some of the papers published on "CFS". The article concludes, "Significant progress has been made in recent years but many questions pertaining to environmental and public health risk analysis remain to be addressed." What an understatement!

But this was hardly the first time that it was mentioned. You just have to look closer. Here's one to ponder: this is a quote on ciguatera poisoning from the same Robert W. Dickey, Ph.D. : "In a subset of patients, chronic illness may occur, characterized by a vague and poorly defined combination of recurring neurologic and neuropsychological symptoms. Pruritus, arthralgia, and fatigue can persist for months or years. The fatigue can be so debilitating that it resembles a chronic fatigue syndrome. Chronicity may reflect lengthy persistence of ciguatoxins in the body or lowered neural thresholds responding to dietary or behavioral stimuli unrelated to ciguatoxins. The persistence of symptoms in some patients for several years has been documented and is not unusual. In one series, 65% of the patients had symptoms 6 months or longer with reported recurrence up to 2 years." This reference is from Ciguatera Toxins: Chemistry, Toxicology, and Detection; Dickey RW; Seafood and Freshwater Toxins — Pharmacology, Physiology, and Detection; CRC Press 2008, Ch 22, 479-500.

The quotation make it obvious that our government knows better than to mention the important findings funded by the NCF but, at the same time, they don't want to answer any further questions in this area. They'll even pretend to look into other causes! Thankfully, the NCF has continued to follow the science and, together, we halp them fund it to find the full answer of what the "epitope" or "difference" consists of. The medical school, currently, is offering testing worldwide to patients. The testing protocol is on the NCF website and also available to all members by mail. I am but one patient, based upon this testing, who has gotten a second diagnosis from my physician of Ciguatera Toxin poisoning. I'm waiting for the rest of the story but I expect to find it in this newsletter and not read about from our government. They, of course, won't disagree. You can't really disagree with proven facts.

(Ed. Note: Dr. Dickey's article is offered to our members and on our website.)

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