By Gail Kansky
From Winter 2011-2012 Forum
The top priority of the National CFIDS Foundation has always been to have the cause of CFIDS/ME found. We're not there yet although we feel we're not too far away having connected and furthered the science already proven. We have funded some of the most important research to date for this illness - information that can save lives! Yet the majority of the CFIDS/ME patient community either has no idea or prefers to keep this secretive.
Anesthesia has always proven to be very dangerous for all patients with CFIDS/ME including myself. A few years before the discovery that answered "why" and showed how any danger can be avoided, I was a victim as well when my heart stopped during routine day surgery. At that time, the NCF was giving out "Information Regarding Anesthesia" to all members. It included suggestions from Paul R. Cheney, Ph.D., M.D. (1992) and Patrick L. Class, M.D. (1996). Neither of their hypotheses proved correct. The problem was exposed and resolved when the world-famous and brilliant ciguatera experts Yoshitsugi Hokama, Ph.D. discovered that a toxin in CFIDS/ME patients, similar to ciguatera toxin, had hijacked the sodium channel and any anesthesiologist using the sodium channel for anesthesia purposes would likely see P W C/M Es have adverse effects. Most general anesthesia, to this day, uses the sodium channel. Not being entirely satisfied with his monumental discovery, Dr. Hokama went further and found the exact sphere of the pathway responsible for the activation that can be so life-threatening to PWC/MEs. As always, he published this discovery in the Journal of Clinical Laboratory Analysis (DOI 10.20033, a journal that is only for researchers. In order to have any paper published in that particular journal, the work must first be able to be fully replicated just from the information given in the paper. If it can't be, the paper is rejected.
Today, I still get calls from distraught patients or their caregivers and still have to add names to our Memorial List of those who died following complications following surgical procedures even though the first papers published on this work was early in 2003! The additions in this issue are, unfortunately, not all exceptions. One recent call was from a woman distraught because her husband, a long-term PWC/ME, had landed in a cardiac intensive care unit following a minor and routine surgical procedure done in a prestigious New Jersey hospital. After hours on the computer, she saw our website and found why her husband had ended up there. Yet he had, she told me, carefully gone to his own state CFIDS support group as well as a federally approved national group to see if they had any suggestions for his upcoming surgery. Indeed they did. Unfortunately, none of it was proven fact. Instead, he found lengthy recommendations from Charles W. Lapp, M.D. that tells you that "Most CFS patients are sensitive to sedative medications" and they "should be used sparingly" and they can see if "cortisol supplementation" is needed along with "magnesium and potassium levels" and to "avoid histamine-releasing anesthetic and muscle-relaxing agents" along with "tapering off supplements before surgery." None of this will reduce the patients risk and none of it helped her husband during his surgery. Many groups offer newer suggestions from Dr. Cheney from 2010 that tells you different types of anesthesia to avoid similar to the one we used to give out. His references include seven papers yet fails to mention the pure and scientifically proven work that found the factual and irrefutable answer. Are Dr. Lapp and Dr. Cheney totally ignorant of this proven science that can be life-saving? Even our federal government, albeit quietly, has accepted proven science fact as mentioned in this review by the FDA's Director of Food Safety Dr. Robert W. Dickey: Dickey RW, Plakas SM., "Ciguatera: A Public Health Perspective": Toxic (dot: 10.101/j. toxicon.2009.09.2008).
I surfed the website of many groups. None that I found listed the proven facts about anesthesia for CFIDS/ME patients. I went to some large groups overseas and found nearly all of them never mentioned this potentially life-saving information. In fact, most of them never even mentioned that, indeed, CFIDS/ME has already been proven to be an autoimmune disease and this same life-saving information could apply to all those who have an autoimmune disease since the marker is based on replicated work on the ciguatera epitope (Clin Lab Anal. 2008). I found the same lack when I went to the website of a professional "international" group. One of the letters we received (see Forum Feedback in this issue) prompted this message.
I asked physicians/patients on our medical committee why this important information isn't easily found and given to patients by all groups. He told me that this is just the way the world is and reminded me how long it took for Professor Marshall who had proved it wasn't stress but a particular bacteria that caused stomach ulcers to be recognized (30 years!) or, for that matter, how many questioned or laughed at Louis Pasteur's findings. Will we stop funding work that follows science until the exact cause is found? No. But now I understand that even when the cause has been proven and a therapy or even a cure accompanies it, most patients around the world will continue arguing about EBV or HHV6-a or Chlamydia pneumonia or the newest retrovirus years after that. The 1% of those who will understand there is no longer an unanswered question but proven black-and-white scientific fact will be few and, although far from satisfactory, it will be unavoidable. Until then, we repeat:
INFORMATION ABOUT ANESTHESIA
Anesthesia has adversely affected patients with CFIDS (also known as chronic fatigue syndrome and myalgic encephalomyelitis). The reason for this has been found. Research funded by the National CFIDS Foundation, Inc. found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the ciguatera epitope, this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.
J Clin Lab Anal, 6/2003, Hokama et al
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606