The U.S. government is obsessed with mental illness as an explanation for society’s ills. The GAO, an investigative arm of the U.S. government, recently admonished the administration for solely focussing upon “stress” related issues in their research into Gulf War Syndrome. Ignoring irrefutable evidence of systemic damage from exposures to multiple toxicants, tax dollars have been wasted on less productive lines of investigation. These, coincidentally, also serve to reduce governmental/industrial liability for veterans’ ailments and similar symptoms in civilian populations which reflect toxicant induced health problems. This does not bode well for the concept of universal screenings for the population at large in aspects of mental health while huge numbers of children and adults lack for the most basic of health care provisions.

Mental illness is not found upon “screening” but requires prolonged observation by multidisciplinary teams of professionals. Neither are the most appropriate therapeutic interventions likely to be offered for those so identified. Even insured parties are generally denied significant reimbursements for effective behavioral and cognitive therapeutic interventions. It takes knowledge of the individual, extensive assessment to rule out other health conditions and a commitment to at least a trial period of therapies which are non-chemical in nature.

The implications for our children are especially alarming. I am a retired speech-language pathologist, specialized in developmental disabilities and have viewed perhaps a thousand children in educational and clinical settings over a 25 year span. Behavioral therapies along with educational interventions were almost universally successful in shaping appropriate school behaviors with only the most violent of children requiring any pharmaceutical interventions. Early intervention also dictated addressing socio-economic needs of the family via case management so that environmental stressors would be removed as contributing factors. These include poverty induced by parental illness or joblessness; hunger and nutritional deficiencies; homelessness; drug abuse; domestic violence and lack of routine medical care. If the government provided for universal health care, shelters and half-way houses, food pantries; drug rehabilitation centers and quality day care/preschool settings, the incidence of behavioral disturbances in the entire population would likely drop significantly.

Drugs also cannot repair the damage to minds by pollution or the ubiquitous use of pesticides and other toxicants adulterating the air, water and food. These have been proven to retard or impair development and alter emotional states of being. Adult responses to such chemical “stressors”, has been most recently documented by Sklan, et. al. in their examination of anxiety reactions to the paired suppression of the protective enzymes paroxonase and acetylcholinesterase (most commonly induced via pesticide exposures). This is further supported by at least a decade of observations made of UK sheep dippers and the studies of Haley and Abou-Donia into Gulf War Syndrome sufferers. As numerous studies have already demonstrated the presence of pesticide residues in bodily fluids of the vast majority of Americans of all ages, we must be forced to consider that many symptoms of an emotional nature are induced by an absence of appropriate legislation and enforcement of environmental protections.

In lauding the pharmaceutical treatment of symptoms usually attributed to mental illness, we must recall that Americans lose more than 177 billion dollars annually in the costs generated by drug morbidity and mortality (Ernst and Grizzel, 2001), There is no logic in foisting inadequately tested or genetically/biochemically incompatible drugs upon the general population. This is especially true of children still in the stages of central nervous system development. The FDA does not examine all studies (positive and negative) conducted in drug development or perform independent research to confirm claims in the absence of competing interests. There are no requirements for the preliminary testing of patients for genetic compatibility of prescribed drugs known to be inappropriate for large segments of the population.

A cynical, but necessary, examination of the priorities of the Bush administration is required before this wide-ranging proposal, generated in an election year, can be properly evaluated. The US government is currently struggling in the throes of excessive debt and demonstrates conflicts of interests with a wide range of industries including the pharmaceutical houses. We must keep an eye to the many existing, but inadequately funded, programs which already provide for the mental, physical and educational welfare of the general population. Given the clinical complexities of diagnosing mental illness, much less treating it, the addition of cursory “screening” procedures would appear to detract from existing channels already in place for the identification and referral of “at risk” persons.

References:

1. E. H. Sklan, A. Lowenthal, M. Korner, Y. Ritov, D. M. Landers, T. Rankinen, C. Bouchard, A. S. Leon, T. Rice, D. C. Rao, J. H. Wilmore, J. S. Skinner, and H. Soreq “Acetylcholinesterase/paraoxonase genotype and expression predict anxiety scores in Health, Risk Factors, Exercise Training, and Genetics study”, PNAS, April 13, 2004; 101(15): 5512 – 5517.

2. Ernst and Grizzle “Drug Related Morbidity and Mortality, Updating the Cost of Illness Model”, J Am Pharm Assoc, 41 (2), 2001

Competing interests: None declared

–Barbara Rubin,
Retired speech-language pathologist/special educator

It is gratifying to see heightened interest in chronic asthma, an increasingly prevalent illness throughout developed countries. Proactive strategies are undeniably the correct approach to take in all disease processes but are of particular importance in asthma, since so many attacks can be prevented through our awareness of triggers for bronchoconstriction.

This brings us to an inherent contradiction in the medical management of asthma, once we acknowledge the many environmentally induced attacks which occur daily in the lives of asthmatics and the medications used to respond to them. In the above referenced article, some benefits accrued to the experimental group. However, control and experimental groups did not show significant statistical differences in reports of ER visits, symptom-free days or continued symptoms of wheeze, night time symptoms, and restriction of activities. The authors did recommend the evaluation of patients for triggers as per allergy protocols (e.g. RAST testing).

The contradiction in this medical model is as follows: Most marketed personal care products, cleaning solvents, articles of clothing, air fresheners, construction materials etc., contain respiratory irritants either listed on the label or the MSDS sheet. Many products which do not offer disclosure of ingredients on their labels (e.g. synthetic “fragrances”), for reasons of “trade secrets”, are nevertheless proven asthma triggers. The American Medical Association and the American Lung Association have published statements to that effect.

Introduction of such irritants to the lungs leads to bronchoconstriction, a natural protection mechanism. We then administer bronchodilators to relieve symptoms which permit the bronchi to open further and permit deeper penetration of offending substances into lung tissues. This results frequently in inflammation, which then calls for administration of steroids. The cycle repeats itself again and again but should not be regarded as a necessary component of asthma. In such a case, these extrinsically triggered asthma attacks are not preventable by medication, only mitigated by it.

True prevention in these mainly non-allergic, reactive asthma events must take place in the marketplace rather than the pharmaceutical laboratory. Medical groups must demand government regulatory agencies require safety testing of all chemicals prior to marketing (much as current EU legislation now requires). In the absence of such rigorous attention to the public health, the public must be entitled to full disclosure of the ingredients of all products being marketed. Choice depends upon disclosure. Most consumers do not know that fragrances may contain toluene or benzene derivatives; that air fresheners can contain naphthelene; that clothing may be treated with formaldehyde (released during ironing), that pesticides contain carrier solvents and synergists which were not part of registration testing etc.

Doctors can recommend patients familiarize themselves with these threats posed by the environment but change must be addressed at the source. Physician’s groups may make their greatest contribution to the management and prevention of asthma by lobbying government and industry to alter manufacturing and labelling policies.

In the meantime, avoidance strategies recently investigated in the New England Journal of Medicine, must play a larger role in management plans. This can reduce reliance upon drugs which have deleterious short and long term side effects and basically profit the same companies which manufacture products inducing asthma. Studies of IgE mediated vs. non-allergic asthma conditions would also go far towards identifying these terrible threats to the public health at every stage of life.

Barbara R. Rubin,
Freelance writer
Disabled by Pesticide poisoning
New York, USA

Competing interests: None declared

I am extremely embarrassed by the state of medical “science”, having just read the article, “What should we say to patients with symptoms unexplained by disease? The ‘number needed to offend’” by Stone et. al. In this day and age of access to science, technology, history and philosophy, we have come to applaud and publish as research, lessons on how physicians can express their ignorance to patients while taking credit for a diagnosis that neither fully comprehends. It makes for a quicker office visit, certainly, but does not add to the practice of medicine and delays the patient in receiving appropriate care.

Let’s examine the issues at stake in the assumptions raised and advocated by the authors of this “study”:

1. In the course of their careers, physicians will frequently be at an understandable loss to explain a variety of problems presented by some patients. Technology permits them to measure a variety of structural and biochemical parameters. However, when the “run of the mill” technology has been implemented without definitive implications, doctors must return to “science”. Science is the superordinate category of investigation, to continue the diagnostic process.
• What parameters have not yet been assessed?
• What dietary factors and/or environmental conditions exist which might account for symptoms from a toxicological point of view?
• Patients are eating from an adulterated and unlabelled food supply.
• They live and work in places where landlords are free to use unlimited numbers of chemicals without notice to tenants.
• Some nebulous case presentations develop into clearer pictures of pathology over time, as with M.S.
• What other opinions should be sought, or literature reviewed, prior to reaching the conclusion that a doctor cannot help a given patient?
• Why not explain to the patient that there may be an organic problem you have not been able to identify along with the possibility that there may be a psychiatric problem to be further explored?
2. Most physicians are unqualified in the specialty area of psychiatry. It takes more than a stymied physician to justify a patient diagnosis of “hysteria, “functional complaints”, “somatization”, or whatever label is popular these days, that doctors use to close the book on a diagnostic problem. Psychiatric diagnoses should not be misused as a default diagnosis when no other answer leaps out to explain patient complaints. The absence of data does not disprove the existence of a condition. To act upon such an assumption is to do a serious disservice to the evolving field of psychiatry, which needs to work upon its diagnostic protocols in search of positive signs for its various diagnostic categories. Citing the mere “thickness of a patient’s chart” as proof of a disorder is an affront to medical science and the profession of psychiatry.
3. The patients who participated in this study had neurological complaints. This very nebulous area of symptomotology is often difficult to diagnose. Such signs may herald the presence of an emerging condition, not yet definable. Toxicological issues are also frequently implicated in subtle neurological conditions, while most physicians have only had a few hours of education in these matters during their careers. Here in the U.S., physicians average about six hours of such study in medical school. A further complication is that doctors here are not supposed to accept payment for work-related injuries, and so frequently avoid such avenues of exploration with the patient to avoid complications in their practices. Such cases are frequently characterized by malaise, memory problems, peripheral neuropathy, pain etc. from solvents, pesticides and other poisons encountered in day to day life.
4. The rate of premature disability is skyrocketing. The Social Security Administration in the USA tells us that 3 of 10 persons entering the work force will become disabled prior to reaching retirement age. The Centers for Disease Control tell us that one in five persons has a chronic ailment generally acquired during their working years. So we have at least half the population showing signs of chronic illness and either leave the workforce or struggle to cope with their problems while continuing to earn a living. In the recent events of the Gulf War, we see between one sixth and one seventh of the healthiest portion of the populatiion succumbing to significant chronic illness.

The human race is simply not not that fragile by nature. We must acknowledge that economic realities have made dangerous technologies available for use by every Tom, Dick and Harry on the planet. We need to admit that the science behind the technology is poorly understood by most of its users. Physicians trying to unravel the broken threads of patients’ lives, who are effected by their individualized responses to the misuse of technolgy or who evidence the early signs of other more well-known diseases, must not be judged in this manner. Every other professional in the world is required to state “I do not have sufficient information to act in this case.” or face the consequences of their actions when they fail, be it a teacher, lawyer, policeman or chemist.

While it is not a popular analogy to compare doctors to members of other professions considered less “august”, it is time to make all professionals accountable for their judgements. The patient who is prematurely judged to have a psychiatric disorder or to be “malingering” will face medical, social, legal and financial penalties that can destroy them and their families.. Physicians must absolve themselves of the need to diagnose ailments in the absence of positive evidence simply because the system implies such a responsibility exists. Appropriate, non-judgmental categories of diagnostic codes must be used in these cases.

Doctors, please change the name of the game to fit the realities of life’s uncertainties. The cost to the patient is unsupportable and does not do credit to either science or the intangible factors of human morality and justice.

Barbara Rubin
New York, N.Y. U.S.A.

Competing interests: None declared

Bass and May, cite a frighteningly high percentage of persons whom they feel qualify for a diagnosis of “chronic multiple functional somatic symptoms”. There is no doubt that such a diagnosis will fit certain individuals. However, the criteria used for making this determination was as follows:

Potential CMFS patients may be identified simply by the thickness of their paper notes, from records of attendance and hospital referral, and by observation of medical, nursing, or clerical staff.

I suggest that in a significant number of cases, this paragraph should be rewritten to read as follows:

Potential doctors of patients who will ultimately receive diagnoses of CMFS, may be identified by short attention spans for reading thick charts, heavy patient loads with brief appointment slots, a strong reluctance to write justifications for referrals to annoyed HMO organizations sending them checks and a near complete absence of scientific curiosity for the unfamiliar. The physician may have an unreasonable fear of litigation, despite the fact that some ailments have their roots in negligence on the part of employers or third parties involved in the work setting. In the U.S., where it is illegal to charge a patient for having an illness of occupational origins, charts may be surprisingly bare of certain diagnostic and historical facts. Few doctors will wait for the worker’s compensation board to review a case in five years to obtain a minimal fee. This is understandable but places the patient in the position of forgoing appropriate medical care as well as justice in injury cases.

Perhaps this may seem harsh to the many dedicated, overworked physicians who are, after all, taking the time to read this journal for their continuing education in a terribly stressful occupation. However, no practitioner can be educated in the nearly unlimited array of illnesses and injuries that can befall the human being. Our age is littered with advanced technologies such as chlordane and phthalates that do the tasks for which they were created – at a cost only counted later when the science behind the technology catches up to our marketing style. Sell first, examine later.

Life is often stressful, so pointing a finger at stress can be a “saving grace” for a doctor reluctant to further investigate vague or multi-system complaints. CMFS may be an unfair assumption often leaped at prematurely to ease the burden of guilt carried by doctors who find themselves unable to help a sick individual. Some doctors, unsure of themselves, may be reluctant to contradict other doctors previously consulted.

I watched one man struggle for nine years with debilitating illness only to learn he had hypoglycemia when a doctor finally prescribed a glucose tolerance test. His thick chart became bare of new entries as he enjoyed the best of health for the next twenty years with only a special diet as a prescription. Another patient developed a variety of gastro- intestinal complaints, neurological problems and respiratory symptoms which all appeared to wax and wane depending upon environmental circumstances. Five physicians later, a neurological evaluation revealed brain damage and toxicological testing indicated chronic cholinesterase inhibition – classic signs of organophosphate pesticide toxicity which should be familiar to British physicians in rural areas. She was considered a resistant patient due to her refusals to take offered medications which only exacerbated her symptoms.

The statistic of 6 percent brings to mind the percentage of British and American Gulf War veterans suffering from similar, “mysterious” complaints so long denied as having a basis in organicity. No matter the findings of researchers indicating that many have CNS and immune system damage or that some belong to a class of individuals prone to toxicological insult (low paroxonase levels). No matter that peers in the French armed forces, not subjected to multiple experimental immunizations, showed a more normal rate of disability post-service.

Perhaps it is immaterial that six percent of the population of California has been diagnosed with chemical sensitivities, a disorder with multiple correlates in the diagnostic codes of the ICD-9 (for example, 989.9, Toxic Effects of Chemicals). Most persons with such a diagnosis are told for years they have some form of CMFS that worsens with administration of multiple medications. Anecdotal evidence is an essential part of such diagnoses, a “test” which doctors are afraid to interpret freely.

What is most important to remember is that the diagnostic criteria used by psychologists and psychiatrists are frequently anecdotal in nature. Yet when patients show patterns typical of certain complex ailments and attempt to partner their doctors in identifying an illness based upon the anecdotal experiences of other patients. they are deemed “absorbed by their illnesses”.

Reminder: When a patient sees a doctor, they are there for the sole purpose of discussing their health. At $200 per hour, few will show their well-rounded natures by discussing sports or politics.

Doctors and patients must all be accepting of the limitations of knowledge; that no doctor is appropriate for all patients who will enter their doors and that some ailments can only be discovered over time with extensive investigation. A diagnosis must never be based upon frustration, wishful thinking or a fear of legal systems which may become involved when appropriate.

This is submitted with respect for the unique partnerships required in the doctor-patient relationship. In particular, this is submitted with respect for those physicians who discuss such conclusions honestly with patients instead of making vague pacifying promises of aid that will never materialize. Sometimes the sentence, “I do not know how to help you.” may be the most appropriate.

Barbara Rubin

I am an unlikely party to be commenting upon the article recently published in your journal, “Prevalence of Gulf war veterans who believe they have Gulf war syndrome: questionnaire study” by Chalder, et. al. The conclusions and indeed, the premises upon which this study is based, is indicative of a basic error in logic which has led to much suffering every time a puzzling medical phenomena is found. You see, I believe I may have Gulf War Syndrome but am a civilian who has never served in the armed forces of any country.

Does my current belief that I have something similar to this pattern mean that I do have GWS? No, it means that after I became disabled with a multi-system ailment which included brain damage and chemical intolerances, my only hope for an explanation of what had befallen me required I look for similar symptomatology among other patients. This is not a search for support for a nebulous belief system but a fact finding mission. Only through finding persons with commonalities of experience and comparing test results could I hope to provide my puzzled doctors with a map for further inquiries. This is the emerging procedure for those who have yet to be diagnosed by a medical model that insists “stress” is the appropriate ICD 9 code for any ailment that cannot be rapidly assessed and medicated to everyone’s satisfaction. It is also an answer for ailments that government agencies might find themselves responsible for compensating or those associated with the manufacturing of profitable items linked to signs of toxicity in humans.

Little wonder that persons who are inquiring as to their status as possible GWS are those who would end up “knowing” someone with the same problems. Perhaps this is an “effect” of having this illness rather than a part of the cause for it. One does not tell members of a cancer support group that knowing other cancer victims resulted in their having this disease. They sought one another out after the fact. Such a search for other victims of a disease process is often less of a need for emotional support than it is a way to confirm that one’s information and medical consultants are most likely to result in a positive outcome for the patient. LIfe disrupting and life threatening illnesses do not inspire most of us to trust in the words of a single medical advisor who may or may not have expertise in the ailment under scrutiny. Emotional support is a secondary benefit of these encounters.

Official agencies should start to wonder how a sixth or seventh of our fighting GULF WAR forces (American incidence statistics resemble those of British forces) can all have similar stories about their illnesses which are strikingly different from ailments in other wars, pre-Agent Orange. No one can deny that stress has been the hallmark of military service throughout the millenia. It is only in recent generations with the proliferation of chemical weapons and “defenses” such as experimental vaccinations and multiple forms of pesticides (untested in those combinations) that these novel patterns of illnesses are observed. Novel circumstances require new problem solving strategies rather than denial of the experiences of so many of our healthiest citizens. Or are they the healthiest?

That leads us to question the other assumption of this article: that all GW veterans started out as identical in physiological terms. Only when one comes to reject such a hypotheses can we proceed with truly objective investigation. None of the references cited in this article mentions why this population might be different from other servicemen and women. I looked further into the matter and found later studies by Dr. Haley (cited in this study), research by Dr. Abou-Donia of Duke University and a body of work by Dr. Furlong at the University of Washington at Seattle. These articles centered around pesticide exposures similar to those I have had in residential and occupational settings. Persons with such exposures and certain symptom constellations affecting multiple systems, also appeared to have deficiencies in an enzyme known as paroxonase or PON 1. I contacted Dr. Furlong and he graciously permitted me to be tested for this substance which is a test not yet commercially available in this country. Lo and behold, I was similar to sub groups of GWS veterans in my low concentrations of this substance known to aid in the detoxification of organophosphate pesticides and the nerve agent, sarin. Might it be more productive to look into these genetic differences rather than denying the common experiences being reported by veterans and civilians in various degrees of severity?

Facts will always remain in short supply when men and women of science are told to “believe” that what patients EXPERIENCE must always be an unreliable basis for research. Perhaps it should be suggested that this is particularly true when the funding for such inquiries might paint an unprofitable portrait for ailments associated with profitable industries such as pharmaceuticals and pesticide manufacturers. We have only to look at recent and upcoming EPA cancellations of pesticide registrations of organophosphates requiring mediation by the PON 1 system for further clues into this “mystery”.

I am just a recently disabled, middle aged woman without a strong background in medicine. However, I shall have to continue to guide the process of my own diagnosis and treatment until patients are regarded as sentient human beings with a certain set of experiences. We may present clinical problems which require treating physicians to seek out researchers looking into illnesses related to our modern technological “advances”. We must not remain a group of “acceptable risks” sacrificed to current medical-industrial denials of ailments associated with possible cases of chemical injury.

Barbara Rubin