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EXTRICATION FROM THE WRECKAGE — PAGE 2 by Alan Cocchetto, NCF Medical Director ©2010 From Summer 2010 Forum Like many of you reading this, there have been numerous lessons that I have learned while on this arduous journey. However, as medical director for the NCF, there is one thing that really bugs me more than anything else, primarily because of the seriousness of this illness and the implications that certain attitudes can have. Perhaps you can guess what I'm about to say? Well, what really gripes me is the opposition that the NCF gets due to naysayer mentality. "It can't be done," "you can't measure that," "this can't be so," etc, etc, etc. You get the picture! Many years ago when I was asked to take over the medical leadership from Jay Goldstein, M.D., it was something that I had to give a great deal of thought about. I must admit, unlike the retired Dr. Goldstein, I didn't have a medical degree. I subsequently came to find out that this fact alone certainly turned some people off and unfortunately turned some contributors away. I understood this fact. The NCF's board, however, was willing to give me a chance and they weren't naysayers when it came to accepting and executing some of my ideas. Well here we are, years down the road. We have all certainly come a great distance. I now realize what a true blessing this opportunity was. The late Nancy Kaiser had always reminded me that "Al, you're just an engineer!" My response was "Thank God!" One day I opened a package from her and there was a shirt with big, bold lettering… "Just an engineer." I have never ever claimed to be anything more. Nancy would gently remind me however that conductors aren't necessarily great musicians but they play an equally important part in an orchestra. As you all know, serious illness is a very humbling experience. It can be quite sobering to say the least. Like all of you, I too am a CFIDS/ME patient. What I am going to comment about, in this article, are several additional connections to the science that the NCF has been pursuing. Furthermore, the basic point I'm trying to make here is this: In reflection, had all of us at the NCF listened to the status quo and to the many naysayers out there in the real world, we never would have reached this destination where we are today. Please keep that in mind as you reflect upon the efforts of a dedicated group of ill patients, tied together by the NCF label, all with one common goal and with one singular desire — to truly make a difference in the lives of patients worldwide via scientific discoveries so as to extricate all patients from this wreckage. Those who have believed in us, whether by contributing financially or by sending us sincere notes of encouragement, know that we are most grateful for all of your kind support. It has served to fuel our mission. As I had mentioned in the last Forum article, the NCF sees ciguatera as the "subgroup" of CFIDS/ME patients that we have been able to identify. This is very important for the following reason. This implies that the NCF's "subgroup" is identified with having an environmental cause since marine toxins are involved. Current scientific research suggests that the key source of this toxic assault is cyanobacteria. Keep in mind that the NCF has been working methodically in toxicology for the past eight years and we continue to grow in knowledge as more research is completed. Is all of this farfetched? The naysayers would tell you that it is. However, just the opposite is true. Interestingly enough, a large study on another chronic illness may also provide us with important clues. The latest evidence in multiple sclerosis suggests that the disease may result from an environmental agent that triggers the illness in genetically susceptible individuals [1,2]. This is certainly noteworthy in light of the NCF's findings. Is there other data that points in our research direction. Yes, there is. In 2002, Suzanne Vernon, Ph.D. and William Reeves, M.D., both from the Centers for Disease Control at that time, published a study of CFS patients where they had analyzed certain gene sequences [3]. In their conclusion they wrote "There was a diverse array of 16S rDNA sequences in plasma DNA from both CFS and non-fatigued subjects. There were no unique, previously uncharacterized or predominant 16S rDNA sequences in either CFS or non-fatigued subjects." Here is where the NCF disagrees with the author's interpretation. In Figure 3, on page 4 of this paper, a list of bacterial sequences is provided on one axis versus CFS patients or controls on the other. By closely examining this list, it is important to note one particular CFS patient that is listed (CFS #10). This patient, but no other CFS patient nor control, was identified as having a bacterial sequence associated with an "uncultured cyanobacterium clone." As such, the NCF firmly believes that this particular patient would most likely be considered to be a ciguatera-positive patient. Thus, this patient would be included in the NCF's defined "subgroup" for CFIDS/ME. I would say this really is pretty unique although these authors obviously think otherwise. Given an illness definition that certainly leaves a lot to be desired, the NCF thinks this particular find is most fortunate as our "subgroup" appears to be right there in this published paper! The next bit of data that points in our direction comes from A. Martin Lerner, M.D. Dr. Lerner had published a paper on cardiac involvement in CFS [4]. In fact, Dr. Lerner has numerous U.S. Patents issued to him, dating back to 1993, regarding the alteration of T-waves in CFS [5]. His research revealed that all CFS patients have abnormal oscillating T-wave flattenings and T-wave inversions that are detectable from 24-hour electrocardiographic (Holter) monitoring. In the paper, the authors state that these T-waves "appear to be an essential element to the pathologic physiology of the cardiomyopathy of the CFS." Interestingly enough, research published in the journal Science by Kwan-Ming Li. from the Hawaii Marine Laboratory at the University of Hawaii, provides an important link to Dr. Lerner's cardiomyopathy research [6]. In this paper, Li injected rats with ciguatera toxin. He observed that "there were arrhythmic heartbeats with displacement of QRS-T wave interval and omission of the T-wave as shown… If the dose proved to be lethal, respiration stopped after several hours, the blood pressure having remained only slightly lower than normal until death." As the result of Li's rat experiments, he concludes that "Cyanosis was observed consistently before cessation of respiration, and since artificial respiration prevented death, the cause of death from ciguatera toxin is believed to be asphyxia." Li's observation of T-wave alterations in rats, due to ciguatera poisoning, appears to fit in with Lerner's T-wave observations in patients noting the shared characteristics of these T-waves. The NCF believes that these observations are not coincidental. Last but not least, here is another tidbit of data to chew on. Most CFIDS/ME patients comment about their "brain fog" from time to time but what does this actually mean? Is there some impairment in memory or is it something else? In the book, Osler's Web, author Hillary Johnson does an exemplary job of describing Nancy Kaiser's condition [7]. Nancy's "IQ, formerly 140, had been measured by Shelia Bastien at 85." So take note that CFIDS/ME caused a drop in Nancy's IQ by 55 points. Certainly that is highly significant! The NCF doubts that patients realize this but there is a legal precedent in the area of ciguatera poisoning [8,9]. In this legal document, a claimant provided medical proof that their IQ dropped 35 points due to ciguatera poisoning! In this case, the claimant won a settlement that included a cash payment of $900,000 plus $5,000 per month, compounded at 3% annually, for the rest of their life which actuarially was expected to approximate 17 years, for a total payout of slightly over 2 million dollars! Anyone who thinks that ciguatera poisoning doesn't cause brain damage should refer to this case law report. This is just another NCF finding for this terrible disease. In closing, I am reminded of something that David Bell, M.D., internationally noted CFIDS/ME physician, wrote in one of his books [10]. Dr. Bell wrote "Ciguatera poisoning was shown to cause ME/CFS/FM (Pearn 2001). Once again, hopes soared that we were finally getting somewhere! I eagerly dug out the paper to find that ciguatera was a specific poison found in the puffer or blowfish in the Sea of Japan, and that if people ate it raw (as in sushi) they could get ME/CFS/FM. Not that many people imported raw puffer fish in Upstate New York. In our outbreak of roughly 220 persons, I could not find any evidence of an enormous sushi party in Orleans County in 1985." Is Dr. Bell a naysayer? Had he read any of the NCF's funded medical research publications? The NCF is aware that there are patients of Dr. Bell's that have tested positive to the Univesity of Hawaii's ciguatera monoclonal antibody test just as there is for other noted physicians such as Paul Cheney, M.D. and Daniel Peterson, M.D. Many of these patients continue to be involved in the latest testing that the NCF has been actively involved in. The NCF does know one thing for certain. In the end, science will prevail and with it, all the truth will come to the forefront… for that is the nature of science! 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