Public Comments on the Draft Report of the Federal Interagency Workgroup on Multiple Chemical Sensitivity

From: Janinetm@aol.com
Date: Tue, 8 Dec 1998 18:11:10 EST
To: adonnay@BCPL.NET
Subject: ATSDR Interagency Report Response

Albert,

I'm sending you a copy of my response to the ATSDR because I was sending it to them late and didn't know if they were providing you copies as I know you requested. Sorry I didn't get to respond sooner. But I still want to be heard so hope they are reading the responses!

Thanks for all the terrific work you do for us,
Janine

ATSDR INFORMATION CENTER
Attn.: Alice Knox
1600 Clifton Road Mail Stop E57
Atlanta, GA 30333

Dec. 5, 1998

Dear Ladies and Gentleman of the Interagency Workgroup,

I am writing in response to the Predecisional Draft, "A Report on Multiple Chemical Sensitivities (MCS)" that the Interagency Workgroup on Multiple Chemical Sensitivities issued on August 24, 1998. I am writing this response despite the hardship of typing with a recently broken arm because I found the report misleading, and I hope that you will listen to the responses that the workgroup receives and amend the report accordingly.

The first paragraph of the executive summary starts the inaccuracies. In line 1 you state, "The workgroup reviewed the scientific literature pertinent to MCS" yet, I find that much of the MCS relevant scientific literature is missing from the report. The workgroup could have saved much time and government money by simply reviewing Nicholas Ashford and Cynthia Miller's book, Chemical Exposures: Low Levels and High Stakes. It is a much more thorough and unbiased review of the scientific literature.

You also say in lines 3-5 that you consider the policy makers and researchers at agencies with MCS issues to be the primary audience for this report. Do you think that MCS suffers would not be interested in the government report that purports to recommend the future actions of the government agencies toward them? From this report I gather that you think we are all neurotic people incapable of reading a report and responding to it. This may set up the bias for the rest of the report.

In part III. Theories of Causation and Mechanisms the report discusses the immune mechanisms, inflammation, neurologic mechanisms including altered sense of smell, and lastly, psychological mechanisms. Although the psychological mechanisms have been shown to be the LEAST likely cause (see Ashford and Miller for the flaws in the psychological studies that you mention), that is the only section in which the workgroup calls for more studies. Further proof of your bias.

You should call for the government to fund an environmental control unit to control for adaptation in future studies. Then we could "prove" once and for all that MCS is a debilitating physical disease. But then you couldn't continue to ignore the problems. That is the only reason not to call for it now.

In lines 1048 and 1049, you are concerned with "the ethical question of exposing persons to substances in ECUs that may cause them to suffer symptoms of ill health," yet by not doing this research you are willing to subject us to those very substances every day in living an ordinary life. Most MCS sufferers already have to isolate themselves from the world so why would you think an ECU would do that? That is the only way most of us are able to stop the escalating symptoms caused by a myriad of chemicals in our world. We are not exposed to one single small dose of one chemical by going into the mall; we are exposed to a myriad of different chemicals that all react with each other as well, and without a doctor present. Which do you think we would rather be exposed to?

Then in section V. Public Health Issues in Medical Evaluation and Care of MCS Patients you say in lines 1085-1087 that patients "should receive a competent, complete medical evaluation and compassionate, understanding care. The goal of this care should be to promote health without causing additional harm." Then lines 1120-1121 state "Physicians should be careful not to overlook other medical conditions that are amenable to treatment in an MCS patient." While in theory that all sounds good, in practice this usually means that either the doctor does nothing or prescribes drugs (chemicals with a specific purpose, but also other effects). Even if your bias comes through and you deal with MCS as a psychogenic illness (which would be most unfortunate) your solution is harmful if you throw Prozac and other antidepressants at the patient. Neither of these alternatives are acceptable. Why don't you look at the treatments that have helped some MCS patients? While doing no harm is good, withholding information that may prove helpful is dangerous. Doctors need to be honest with patients about the fact that chemicals are harmful and that discontinuing use of some chemicals would be beneficial. We need to look at the whole range of medical traditions, not just Western allopathic medicine. We cannot discount the thousands of years of Eastern medical tradition which has dealt with the overall health of an individual so well. Western medicine tends to wait until we are in a crisis and then tries to perform miraculous interventions. There is more to good health than eating well and exercising. We must do more before MCS is at the end stages and then say aggressive treatments are unproven. At the last stages of cancer, most therapies are unproven too. That is why we hear the doctors promote early detection of cancers when something can still be done. This is true of chemical sensitivities as well. You talk about the treatments for MCS not being tested and that doctors should do no harm, but patients have rights too. What helps should always be available to them.

Unbelievably, lines 1154-1159 denigrate the complete avoidance of chemicals, even though avoidance is the only alternative that you recognize as potentially helpful. Yes, isolation is hard, so why aren't you promoting cleaning up the environment of harmful chemicals and using them only when absolutely necessary?

It must be kept in mind that the medical industry is directly connected to the drug and chemical companies. Much of the research that conveniently finds no physiological basis for MCS is funded by those whose financial interest would be harmed if the government admits that chemicals at low levels can harm human health. Look at the history of the tobacco industry.

Your recommendations are basically the same that reports have been asking for for the last seven years. At this point, we should be moving farther with the knowledge we've gained in the last seven years.

On page 60 of the report is Table 5: Recommendations from Selected Meetings about MCS. From this table, you list your recommendation as everyone that was selected in four or more previous meetings except Studies in an ECU. This shows your bias again.

I can't help but wonder if your bias towards a psychogenic origin has to do with the fact that Dr. Frank Mitchell, who is simply listed as a consultant at the end of the report, wrote the first draft of this report. Nowhere in the report does it divulge that he is a member of the board of ESRI, the chemical industry funded group that sole purpose has been to continually downplay the negative health effects of chemicals, just as the Tobacco Institute does for tobacco.

In many places of the report, it states that a cost-benefit analysis is necessary in determining public health policy. While of course this is true, we must look at the cost of the environmental impact on the earth and human health should be factored in to the cost of any product or business operation so that a true cost-benefit analysis can occur. A few people should not get wealthy at the expense of the whole. We are just now factoring in the cost to Medicare for the disastrous effect of tobacco use. But what about the medical costs for private citizens who have suffered the harm of secondhand smoke? Why don't we learn from the past, instead of reliving it now with chemicals? Just because the chemical companies have more to lose and are using the same tactics that tobacco companies have gotten away with for years, doesn't mean that government agencies have to fall for it all again. Please care more about the people than the money of these companies!

Sincerely,

Janine Melrose

cc: U. S. Representative Ronald Kind
Senator Herb Kohl
Senator Russ Feingold
President Bill Clinton
Vice President Al Gore