Summary-line: 1-Feb n, wilcox@cis.ohio-state. #immune: letter to Docs *** EOOH *** Return-Path: Date: Fri, 1 Feb 91 12:46:54 pst From: cnorman (Cynthia Norman) To: cnorman, wilcox@cis.ohio-state.edu, luna@ccwf.cc.utexas.edu, anasaz!john@asuvax.eas.asu.edu, dwyer@nosc.mil, jgautier@ads.com, b-davis@cai.utah.edu, richter@triton.unm.edu, hxkpy@slacvm.slac.stanford.edu, botteron@bu-it.bu.edu, rollo@xylogics.com, proud@ihlpy.att.com, bill@picard.att.com, jsparkes@bnr.ca, island!green@uunet.uu.net, ann@snow-white.merit-tech.com, iex!neptune.iex.com!bert@uunet.uu.net, siang@biochem.umass.edu, smalley@pilot.njin.net, king@reasoning.com, mnetor!perle!kevin@cs.toronto.edu, afc@shibaya.lonestar.org, mark.ochsankehl@p2.f175.n120.z1.fidonet.org, pjz@ceres.physics.uiowa.edu, ardyk@tc.fluke.com, cyn@mdaali.cancer.utexas.edu, ogicse!sequent!roseal@ucsd.edu, paulxxxx@portia.stanford.edu, andrea@sdd.hp.com, mvac23!thomas@udel.edu, ames!claris!netcom!shelamer@ucsd.edu, nick@icad.com, marks@ocfmail.ocf.llnl.gov, schillin@scl.cwru.edu, 880039a@acadiau.ca, lbrueck@wpi.wpi.edu Subject: immune: letter to Docs Reply-To: cnorman@ucsd.edu Return-Path: Date: Thu, 31 Jan 91 22:44:40 -0500 From: Patricia P Wilcox FROM: Patricia P. Wilcox 6617 Home Road Delaware, OH 430l5 DATE: January 28, 1991 TO: Jay A. Levy, MD University of California, San Francisco Medical Center 551 Parnassus Ave. San Francisco, CA 94122 and Carol J. Jessop, MD 6500 Fairmont Ave, Suite 7 El Cerrito, CA 94530 Dear Dr. Levy, [Dear Dr. Jessop,] Yesterday I saw a note on the Internet computer network describing the test that you and Dr. Jessop [Dr. Levy] have developed which measures the level of CD8+ cytotoxic T cells in chronic fatigue patients. It is good news indeed that you have developed an analytical test for CFS. I believe that I have discovered the actual *cause* of the elevated level of cytotoxic T cells in chronic fatigue syndrome, and I am writing to you and [Dr. Jessop] Dr. Levy in hopes that you will understand the significance of what I am saying, and will make good use of the information. (I have been trying, with very little luck, to explain all this to Dr. Gunn at the CDC. It may be that he was overwhelmed by the mass of reference material I sent, so I will try to keep this brief. I will gladly send references, case histories, and supporting information upon request.) _To summarize my position:_ I believe that chronic fatigue syndrome is a reaction of the immune system to small chemicals (haptens) which bind to body protein carriers to form immunogenic conjugates. This is exactly the same mechanism which causes drug allergies. As in drug allergies, there is an initial sensitizing period during which there are no symptoms---the symptoms develop upon subsequent exposure to the sensitizing substance, or to anything in a family of cross-reacting substances with similar chemical structure. By far the most common sensitizer causing chronic fatigue syndrome is *methyl isobutyl ketone*, which is (along with n-butyl acetate) one of the major components in the solvent in Sanford Expo Dry Erase (whiteboard) Markers and Deft Spray Lacquer. (See attached Material Safety Data Sheet for Deft Spray Lacquer.) The disease has reached epidemic proportions due to the widespread use of ketone-based whiteboard markers in our offices, schools, and hospitals. Cross-reacting chemicals which are also strong sensitizers, and which account for some reported clusters of CFS, are *violin rosin* (specifically dark rosin, containing dark blue or black aniline dyes), and *benzoic acid* (a major component, along with rosin, in Tuff-Skin Tape Adherent, widely used in athletics). I believe that toxins associated with infectious diseases such as Epstein-Barr virus will turn out to be cross-intoleragens that trigger immune reactions in individuals *who have already been sensitized* by exposure to, e.g., the methyl isobutyl ketone in whiteboard markers. (A bit of unfounded speculation here: the offending toxin in Epstein-Barr virus is, I think, produced by the body itself in the course of fighting the infection. In diseases like scarlet fever and rheumatic fever, it may be the disease organism that produces the toxin.) Individuals (like me and my chemically-sensitive daughter) with HLA A1/B8 tissue type are especially likely to develop drug and chemical-intolerance reactions. I predict that if you determine HLA A and B types for a sample group of CFS patients, you will find a significantly higher occurrence of the HLA A1/B8 allele than the 18% to 24% figure observed in the general population. _How does this tie in_ with your observation of an elevated level of cytotoxic T cells? Easily. In an immune response to a drug or other small molecule, the cytotoxic T cells are a mechanism by which the body destroys the hapten/tissue conjugate. _Can we devise an experiment_ to measure this in the laboratory? One reason that drug allergies are difficult to measure (and, perhaps, that symptoms of chronic fatigue syndrome are so variable) is that many different body tissues---blood, myelin, muscle tissue, pancreatic tissue, and many others---may be destroyed. The specific tissue which is attacked depends on the genetic makeup of the individual. The effects of tissue damage are superimposed on the systemic effects caused by the immune response. Some researchers have succeeded in measuring immune response to small chemicals by inducing the chemical to bind to something like horseshoe crab hemoglobin or albumin, and then demonstrating that the combination is immunogenic. It is likely to require patience, persistence, and luck to come up with a combination that works, but it is certainly not an unheard-of thing to attempt. _Conclusion._ I hope that this letter will inspire you to do a bit of investigation to convince yourself that Sanford Expo Dry Erase (whiteboard) Markers might in fact be the cause of a large number of CFS cases. Removing ketone-based marking pens from our schools and offices could be a crucial step towards preventing more people from getting sick and easing the lives of those of us who are already sick. In any case, we will have accomplished a major first step if we have managed to discover what's really causing the disease. Yours truly, Patricia P. Wilcox