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Defining Multiple Chemical Sensitivity
 
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Defining Multiple Chemical Sensitivity [Library Binding]

Bonnye L. Matthews
3.5 out of 5 stars  See all reviews (2 customer reviews)
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Seattle, Washington's Bonnye L. Matthews developed chemical sensitivity from work-related, low-level toxic exposure. She is also the author of Chemical Sensitivity.

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2 of 2 people found the following review helpful
3.0 out of 5 stars MCS, Aug 1 2003
By 
Heidi M. Hawkins "heidimo" (Bellingham, WA: City of Subdued Excitement) - See all my reviews
(REAL NAME)   
This review is from: Defining Multiple Chemical Sensitivity (Library Binding)
Bonnye Matthews has obviously worked very hard to bring us this summary of biochemical science and medicine research on the topic of Multiple Chemical Sensitivity (MCS). For people with MCS or who want to learn about it strictly from the point of view of the biochemical system in the research-outcome model, this is an invaluable book. If your priority is the much over-rated "scientific proof" that MCS is real and not psychosomatic, because you can't think outside that box, or perhaps more importantly, if you need that sort of documentation to present to people who think that way and only that way, this book will speak to you. There is much of value, I would imagine, for someone attempting to navigate the system for medical benefits, disability, or for other legal situations.
However, as a practitioner who specializes in the SUCCESSFUL TREATMENT OF MCS, I found this book wearisome and depressing. I was hoping to find some cutting-edge theory. There is little theory in this book, and nothing ground-breaking, inspiring or exciting. In fact, it is extremely depressing. There is nothing here to challenge the mainstream view that MCS is untreatable. As usual, Medical Dieties decide if they can't treat something then nobody else can. Certainly MCS is tantamount in pointing out the errors of "better living through chemistry" thinking. If a person can't handle exposure to chemicals and the only medicine you can offer is CHEMICALS, it should be glaringly obvious that the medicine will not only fail, but will make the person sicker. This is one of the many reasons why natural medicine is so practical, and has withstood the test of time as well as tremendous efforts at total eradication of said medicine. There is no mention of natural medicine in this book, however.
Probably the most worthwhile part of the book for someone who is NOT trying to prove that MCS exists to the narrow-minded is the personal element. The show of compassion for people with MCS in this book is moving, when you can find it. I found Ms. Matthews' personal story at the end of the book to be utterly heartbreaking and infinitely frustrating, as the system set out to crush her case and set a precedent of denial and lies to avoid responsibility and of course, payment. For a person in her state of health to create and publish this book must have been a gargantuan effort, and truly a labor of love. I do hope this book has helped people to accept MCS as a reality and helped people gain support from the system they have paid into on good faith. I wonder on a personal level what has become of Matthews since this book was written, and can only hope that she has found a way to heal and not just survive.
End note to those with severe MCS: My copy of this book does not have a strong smell, so if you're sensitive to such things you may be able to tolerate this book on a sensory level.
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4.0 out of 5 stars a chock full of disturbing data, Feb 11 2003
By 
C. Casanova "Pat Casanova" (DC area) - See all my reviews
(REAL NAME)   
This review is from: Defining Multiple Chemical Sensitivity (Library Binding)
[NOTE: I originally wrote this review on February 10, 2003. The review was brief and I don't think it covered the book's content well enough. I also don't think I was as critical of the book as I should have been. So I have decided to update this review.]

This is an incredible book. For MCS sufferers this is unquestionably one of the best books to own--Unquestionably.

The book is divided into 4 sections, with multiple chapters in 2 of the sections. Though the sections are different, the chapter numbers keep on running through all 4 sections (you'll ll see what I mean).

SECTION I: MEDICAL INFORMATION

Ch. 1. Chemical Sensitivity: A Psychological Perspective by Eileen R. McCarty (clinical psychologist)

2. MCS: Trial by Science by Donald L. Dudley, M.D.

3. SPECT Brain Scanning After Chemical Injury by Gunnar Heuser, M.D.

4. Porphyria, Cytochrome P-450, and Toxic Exposure by Bonnye Matthews

SECTION II: Legal Information

5. No Balm in Gilead: Why Workerï¿s Compensation Fails Workers in a Toxic Age by Randolph Gordon

SECTION III: Science and the Literature

6. Junk Science by Bonnye Matthews

7. Medical Literature and MCS: An analysis of Seven Papers by Donald Dudley

SECTION IV: Personal Experience with MCS

8. My Experience with Chemical Sensitivity by Bonnye Matthews

REVIEW OF EACH CHAPTER:

Chapter 1: Chemical Sensitivity: A Psychological Perspective by Eileen R. McCarty (clinical psychologist)

Contrary to what its title might seem to implicate, McCarty's chapter does not represent or defend a psychogenic perspective of MCS. The chapter introduces readers into the problem of how Industry focuses on the manufacturing benefits of chemicals while ignoring the possible illnesses that are caused by such. The chapter then begins to explain why some doctors interpret MCS sufferers' problems as being emotionally originated.

Then the chapter delves into a very brief and lacking summary of--at the time--powerful recent research. (Don't get me wrong, the research is still powerful, but I don't think I'd call it "recent"). Such includes information on porphyria, Callender's brain scans and some very interesting information on DHEA (chemical messenger, or in better-understood terms, a hormone) and its potential beneficial affects on MCS patients. With regard to DHEA, McCarty says, "An [MCS-afflicted] individual will still likely react to chemical exposure, but his or her overall quality of life may be enhanced." (Pg. 7)

I very much like McCarty's description of just how complex MCS and MCS research is: "Sometimes the search for answers leads only to further questions; passing through one door, we discover more doors waiting to be opened." (Pg. 7)

Chapter 2: "MCS: Trial by Science" by Donald L. Dudley, M.D

Donald Dudley's chapter focuses on his unique research on MCS.

Dudley studied the P300 brain wave (Auditory and Visual) of twenty patients with MCS (under Cullen's definition). Upon exposure to chemicals that the subjects reported being sensitive to, their P300 wave was dramatically and disturbingly decreased. Two of the subjects developed seizures.

What is unique about this research is that it is pretty much without controversy. Let me explain: Emotions have ZERO influence on the P300 brain wave. Therefore any changes to this brain wave upon challenge must be the result of organic mechanisms.

Dudley's findings on NMDA activity and the olfactory system in MCS are intriguing. According to Dudley NMDA activity can lead to the cell injury and death and may be responsible for some symptoms of MCS (or at the least, contribute to the severity of such symptoms).

The only problem is that Dudley has thus far not attempted to replicate his findings, which saddens me. Even more remarkable is that no one else has attempted to replicate his findings (on the P300 brain wave in MCS)! That is astonishingly stupid.

(See Pg. 24)

Chapter 3: SPECT Brain Scanning After Chemical Injury by Gunnar Heuser

Heuser's chapter discusses his research on brain scans before and after chemical exposure with claimed chemically sensitive patients.

According to Heuser's findings, most MCS patients suffer decreased blood flow to certain areas of the brain upon being exposed to perfume. (Pgs. 27-30) [Simply believing that one's flow of blood will be decreased when exposed to something will not make it so. Likewise, in phobias, one's flow of blood is not decreased when the person is exposed to whatever he or she is afraid of]

Problem: The chapter needs to be updated. Heuser and others have since done more work on brain imaging on chemically sensitive sufferers. The book should be updated to include this information.

Chapter 4: Porphyria, Cytochrome P-450, and Toxic Exposure by Bonnye Matthews

Here Bonnye Matthews says there are 3,000+ chemicals--including those in perfumes-- that trigger porphyria attacks. However, the only citation of evidence for this that I was able to find was a reference to Cynthia Wilson. I am not saying Wilson is incorrect, but rather I am saying Matthews should have been more careful in documenting the evidence.

Matthews fails to take into account of this theory (even though she notes it) that not all MCS sufferers test positive for porphyria, even during reaction. Nor are there any controlled experiments of the theory. (Bell, 2002)

Matthews misinterprets the Mayo Clinic study she refers to. The Mayo Clinic study did NOT establish that the MCS subjects had porphyria. Rather, the study showed that the subjects had isolated porphyrin metabolism abnormalities. (Which happen to be explained by the two currently dominant theories of MCS etiology: Pall's fusion theory and Donnay's CO poisoning theory. Both theories explain the porphyrin metabolism abnormalities in MCS)

Matthews also goes way too far in saying that the porphyria model is the first model on MCS. Such a claim is absurd for models of MCS were out over a decade before this book's release.

Chapter 5: No Balm in Gilead: Why Worker's Compensation Fails Workers in a Toxic Age by Randolph Gordon

I won't comment on this chapter because I have not read it. The reason being that I am not very good at dealing with legal issues--I am not a legal expert.

Chapter 6: Junk Science by Bonnye Matthews

This chapter clarifies what science and what the scientific method are. It explains the grueling process that should be--but rarely is--used to ensure the accuracy and objectivity of a study.

Matthews explains why "Junk Science" is an oxymoron that should never be applied to the position that MCS is organic.

Chapter 7: Medical Literature and MCS: An analysis of Seven Papers by Donald Dudley

This chapter blew my mind. It really sickened me to know how sloppy the research has been by those who oppose MCS recognition. The chapter is both enlightening and disturbing: It discusses the fact that there are seven major studies that are used to show MCS is a psychogenic condition. In these seven studies, there were a total of 334 patients studied. However, no more than thirty-three of these patients actually had MCS. In five of the studies, none of the patients had MCS. Of the remaining two, in one study, eighteen out of forty-one had MCS, and in the other study no more than fifteen out of fifty-three had MCS. Thus, it is fair to state that the studies have nothing to do with the real MCS. (See pgs 111-130) [Note: With those few claimed MCS victims in the studies, Dudley was being generous. It is possible that those few did not actually have MCS]

Chapter 8: My Experience with Chemical Sensitivity by Bonnye Matthews

Talk about wow! This made me even sicker than Dudley's chapter! I was so upset and enraged after reading this chapter that I lost sleep over it! I almost think it would be better for people to not read it--but then the person would be deprived of valuable information.

Matthews' personal story is the cherry on the ice cream. I believe it will produce a very large amount of angry patients and doctors.

Matthews explains how her personal experience demonstrates that the US medical and government systems have deliberately ignored MCS and even suppressed research on it. It really upset me to learn the things I learned in this chapter. It made my stomach churn. I may never view the integrity of the US medical establishment in the same way again.

NATURAL MEDICINE AND MCS:

I agree with another reviewer here, that the book should have discussed natural medicine. I think Matthews was so concerned about pleasing traditional medical doctors (who cynically request documentation of MCS) that she didn't want to turn them away with a discussion of natural medicine.

The scientific literature is filled with evidence of natural medicine's beneficial and likely beneficial affects on MCS: HGH therapy beneficial in MCS' sister diseases CFS and FM; MCS severity alleviated by hydroxocobalamin and cyanocobalamin; MCS severity alleviated by antioxidant therapy; etc.

The book should be updated to include this natural medicine data and much more.

SUMMARY:

Though the book is not perfect and has several flaws within it, it is, again, unquestionably one of the best books MCS sufferers can own. It contains very useful hardcore scientific data, objective reasoning and evaluation, and a lot of compassion. It has the power to move many people and I am sure it has and will continue to do so.

The book's overall message that MCS should not be ignored and cannot be forever is clear and powerful. Without a doubt, this book is a riveting, stomach-churning chock full of disturbing data.

~ Pat Casanova

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Amazon.com: 4.4 out of 5 stars (5 customer reviews)

20 of 20 people found the following review helpful
5.0 out of 5 stars MCSS? Please read this book., Oct 25 1998
By martin@levin.pl.net Phillippa Martin. S... - Published on Amazon.com
This review is from: Defining Multiple Chemical Sensitivity (Library Binding)
"Defining Multiple Chemical Sensitivity" is a carefully documented story, written to establish knowledge and truth based on scienfific method. The first chapters cover some of the latest work in biomarkers for demonstrating chemical poisoning. This poisoning may occasionally be followed by the complex of symptoms called Multiple Chemical Sensitivity Syndrome (MCSS). Biomarkers (medically verifiable tests) include measurable changes in molecules, biochemistry, or cells from human tissue or fluids. Included here are auditory and visual evoked (or "event-related") potentials (ERPs), SPECT scans, acute intermittent porphyrinuria, and changes in levels of cytochrome P-450. These papers go a long way towards providing an understanding of why the chemically poisoned experience such brain fog and react to so many things. There is information on how to prevent/counter attacks. Donald Dudley's chapter, "MCS: Trial by Science" shows how the influence of the olfactory system has been quite underestimated in medical science. 20 MCS patients (under Cullen's definition) were exposed to substances like formaldehyde, MEK, perfume, diesel, a whiff of felt pen... - all chemicals having 6 or fewer carbon fragments in their volatile component. Neurotransmitters from the olfactory system (like glutamate and NMDA), also have molecules with this structure. It is thought that the 6-or-less carbon chemicals act as agonists for the glutamate and other amino acids. And these are the same amino acids which are implicated in brain cell injury - eg stroke, pain, depression and degenerative brain disease. In the study, stimuli were given to eyes and ears - a changing checker board and clicks, before and after the chemical exposures. Electrodes measured how long the brain took to react and how much brain reaction there was. The findings were dramatic. Gunnar Heuser's chapter covers SPECT brain scanning; pictures of the brain which show how the oxygen-carrying blood flow is impaired in the frontal, temporal and parietal lobes in people with exposure to neurotoxic chemicals. This hypoperfusion is further decreased on exposure to, for instance, perfume. Mathematical tasks did not light up the appropriate areas of the brain. He suggests possibilities to explain these findings. These kinds of brain affects were actually detected in a study on DDT in 1966; this research was never followed up. However progress is being made - I liked Eileen McCarty's first chapter parting shot: "A cosmetic salesperson related her poorly adhering nail polish to the lessening of formaldehyde in the formula...". The book has lots of interesting "bits". Porphyrias are deficits of certain enzymes required for the production of heme. Heme is used to produce haemoglobin (for carrying oxygen and carbon dioxide in the blood), and cytochromes (for breaking down such things as steroids, drugs, pollutants, mutagens and natural plant and animal products. Prozac and aldehydes have been shown to inhibit cytochrome P-450. Porphyrias were an extremely rare hereditary condition (remember "The Madness of King George?") usually with a single enzyme missing. But specific testing (through the Mayo Lab) shows how a chemical exposure can cause a multiple enzyme deficit. Bonnye Matthews, in this chapter, gives a clear explanation of the process. She demonstrates that for the first time a model of MCSS is possible. Some Gulf War veterans have also tested positively for toxic-induced porphyrias. The information in this chapter on the substances which can set off an attack is vital. Though there is a great deal of common sense in this book, it's not a light read - there's necessary information for medical professionals - GPs, neurologists, neuropsychologists, psychiatrists, occupational health physicians, allergists, immunologists, cardiologists, gastro-intestinal specialists, anaesthesiologists... in fact it should be compulsory reading at medical schools and for all practising doctors, such are the wide-ranging affects of chemical poisoning. Bonnye unravels the medical detective story that is behind MCS Syndrome - the unethical and incompetent research and papers and medical assessments which were designed to deny compensation by showing MCS as psychosomatic. (The spinoffs are that these papers are now used in countries like New Zealand to deny claims based on MCSS.) But the book's not a witch-hunt - more of a plea for justice and open-mindedness in establishing facts. Bonnye Matthews also tells her own story - because she was (unwittingly at first) in the thick of it as a research subject and recipient of workers' compensation (for a while anyway) in Washington. Her unecessary medical procedures - the methacholine challenge, the venous punctures, even being forced to attend appointments downtown against the advice of her treating physicians are horrifying in their consequences. And loads more including a legal section which shows how a scheme which was intended to be no-fault insurance for work-related individuals has become an adversarial process (and this is Washington, not New Zealand). The measured title of this book belies a gripping read which may make you feel outraged and sick. Please read this book.

11 of 11 people found the following review helpful
5.0 out of 5 stars This is a powerful tool for education and activism., Sep 30 1998
By A Customer - Published on Amazon.com
This review is from: Defining Multiple Chemical Sensitivity (Library Binding)
BOOK REVIEW DEFINING MULTIPLE CHEMICAL SENSITIVITY Edited by Bonnye L. Matthews McFarland & Co., Inc. Jefferson, NC, 1998 REVIEWER: Irene Ruth Wilkenfeld<P>Having any chronic illness is challenging. Having a chronic illness that is not recognized by mainstream medicine can be a nightmare. Multiple Chemical Sensitivity (MCS) is one such medical conundrum. It immobilizes lives, alters destiny and erodes potential. By all accounts the number of chemically injured patients is growing exponentially and yet institutional dismissiveness and resistance seem more entrenched than ever before. And patients, feeling alienated and ostracized, find themselves caught in the crossfire of a bitter tug of war between traditional and alternative (environmentally aware) physicians. <P>I would encourage anyone dealing with this syndrome to get a copy of DEFINING MULTIPLE CHEMICAL SENSITIVITY. This one slim volume is like having your own personal team of `pro bono' advocates, on call to support you, 24-hours a day. It contains up-to-date medical and legal information, as well as a detailed, very personal, compelling case history with which you will easily identify. Some may call this last section "mere anecdotal evidence." I call it a powerful account of an inspirational woman, (Bonnye Matthews) working to fight an intransigent and badly flawed system. <P>A section on Workers' Compensation, by attorney Randolph I. Gordon will be invaluable to anyone trying to navigate this circuitous, often unresponsive system. It will also serve as a treasured aid to anyone involved in toxic tort litigation. Useful information on hazard communication, regulatory guidelines, the validity of low-level exposures, proving causation in the courtroom, coping with skepticism, along with pertinent legal precedents to help you authoritatively present your case to a prospective attorney, are all here!<P>Bonnye Matthews has done a masterful job of reviewing the latest complicated information on porphyria and making it readable by the layperson. "With understanding porphyria, it is now possible, for the first time, to create a model of MCS." In a scientific climate insisting on "biomarkers," this may well be the key to opening the door to the validation of MCS.<P>If you need to help document your injuries, you can learn about the latest in brain scanning technology, a section written by Gunnar Heuser, M.D., Ph.D. A chapter by Donald Dudley, M.D. will help you critically analyze the medical literature on MCS and sort out the distortions from the facts. You will learn how to defend yourself against arrogant medical misdiagnoses and learn to appreciate the reasons why conventional medicine prefers to define MCS as psychogenic rather than admit that it is an avoidable problem of chemical poisoning.<P>You might just want to get an extra copy to share with skeptical family members and friends. This is a powerful tool for education and activism.

12 of 14 people found the following review helpful
3.0 out of 5 stars MCS, Aug 1 2003
By Heidi M. Hawkins "heidimo" - Published on Amazon.com
Amazon Verified Purchase(What's this?)
This review is from: Defining Multiple Chemical Sensitivity (Library Binding)
Bonnye Matthews has obviously worked very hard to bring us this summary of biochemical science and medicine research on the topic of Multiple Chemical Sensitivity (MCS). For people with MCS or who want to learn about it strictly from the point of view of the biochemical system in the research-outcome model, this is an invaluable book. If your priority is the much over-rated "scientific proof" that MCS is real and not psychosomatic, because you can't think outside that box, or perhaps more importantly, if you need that sort of documentation to present to people who think that way and only that way, this book will speak to you. There is much of value, I would imagine, for someone attempting to navigate the system for medical benefits, disability, or for other legal situations.
However, as a practitioner who specializes in the SUCCESSFUL TREATMENT OF MCS, I found this book wearisome and depressing. I was hoping to find some cutting-edge theory. There is little theory in this book, and nothing ground-breaking, inspiring or exciting. In fact, it is extremely depressing. There is nothing here to challenge the mainstream view that MCS is untreatable. As usual, Medical Dieties decide if they can't treat something then nobody else can. Certainly MCS is tantamount in pointing out the errors of "better living through chemistry" thinking. If a person can't handle exposure to chemicals and the only medicine you can offer is CHEMICALS, it should be glaringly obvious that the medicine will not only fail, but will make the person sicker. This is one of the many reasons why natural medicine is so practical, and has withstood the test of time as well as tremendous efforts at total eradication of said medicine. There is no mention of natural medicine in this book, however.
Probably the most worthwhile part of the book for someone who is NOT trying to prove that MCS exists to the narrow-minded is the personal element. The show of compassion for people with MCS in this book is moving, when you can find it. I found Ms. Matthews' personal story at the end of the book to be utterly heartbreaking and infinitely frustrating, as the system set out to crush her case and set a precedent of denial and lies to avoid responsibility and of course, payment. For a person in her state of health to create and publish this book must have been a gargantuan effort, and truly a labor of love. I do hope this book has helped people to accept MCS as a reality and helped people gain support from the system they have paid into on good faith. I wonder on a personal level what has become of Matthews since this book was written, and can only hope that she has found a way to heal and not just survive.
End note to those with severe MCS: My copy of this book does not have a strong smell, so if you're sensitive to such things you may be able to tolerate this book on a sensory level.
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