Knows Her Stuff

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FDCH Congressional Testimony, November 3, 1999

November 3, 1999, Wednesday

SECTION: CAPITOL HILL HEARING TESTIMONY

CLAUDIA S. MILLER, MD SENATE COMMERCE, SCIENCE AND TRANSPORTATION

MANUFACTURING AND COMPETITIVENESS MACHINE TOOL INDUSTRY

Committee on Veterans' Affairs Subcommittee on Benefits . United States

House of Representatives Invited Testimony by S. , M. D., M.

S. Environmental and Occupational Medicine Department of Family Practice

October 26, 1999.

I have been asked to explain how physicians who see sick Gulf War veterans

can observe the same or similar symptoms and interpret them as either

undiagnosed illness or diagnosed illness. Even when doctors apply monikers

to these patients' illnesses, like depression, migraine headaches, asthma,

irritable bowel or fibromyalgia, these monikers do not explain why these

veterans are sick. Most have symptoms involving several organ systems

simultaneously. For them there is no unifying diagnosis offered, no etiology

specified, and no disease process clarified. In truth, all of these veterans

are undiagnosed because what we are dealing with is an entirely new

mechanism of disease not covered by standard medical diagnoses one which

presents itself symptomatically as different conditions to different

specialists. The rheumatologist observing diffuse muscle pain diagnoses

myalgias. The neurologist hearing head pain and nausea diagnoses migraine

headaches. The pulmonologist finding airway reactivity diagnoses asthma. The

psychiatrist seeing chronic malaise diagnoses depression. The

gastroenterologist noting GI complaints diagnoses irritable bowel syndrome.

Some private practitioners diagnose multiple chemical sensitivity, or MCS,

which is not a diagnosis in itself, but rather just another manifestation of

the underlying disease process. So what is at the core of this myriad of

symptoms that has come to be called " Gulf War Syndrome? " What is the

underlying disease process? The key is in the new-onset intolerances these

DeoDle share. Over the past six years, I have served as a consultant to the

VA's referral center for Gulf War veterans in Houston. The vast majority of

the veterans there reported multiple new intolerances since the War. Among

the first 59 patients, 78% reported new onset chemical intolerances; 40%

experienced adverse reactions to medications; 78% described new food

intolerances; 66% reported that even a can of beer made them feel ill; 25

percent became ill after drinking caffeinated beverages; and 74 percent of

smokers felt sick if they smoked an extra cigarette or borrowed someone

else's stronger brand. More than half reported new intolerances in all three

categories -- chemical inhalants, foods, and drugs or food/drug

combinations. One mechanic said that before the Gulf War his idea of the

perfect perfume was WD-40. Since the war, WD-40 and a host of other

chemicals make him feel ill. Many veterans no longer fill their own gas

tanks because the gasoline vapors make them " spacy " or sick. Some won't

drive because they become disoriented in traffic and they fear causing an

accident. Or they can't find their cars, forget where they are going or get

lost in once familiar areas. One VA study found excess motor vehicle deaths

among Gulf veterans and interpreted this as possible increased risk- taking

behavior (Kang and Bullmann, 1996). What the veterans tell me is that they

get confused, go off the road, mistake the accelerator for the brake, and

have trouble judging stopping distances when they are exposed to gasoline,

diesel exhaust, or freshly tarred roads. Researchers at the Wood

Medical School in New Jersey and at the University of Arizona have

noted similar multi- system symptoms and intolerances to common chemicals,

foods, and drugs among the veterans (Fiedler et al, 1996; Bell et al, 1998).

And a CDC study found that ill Gulf War veterans reported more chemical

intolerances than healthy veterans (Fukuda et al, 1998). These studies are

confounded by a phenomenon called " masking, " which occurs when people become

intolerant to many different things ( and Prihoda, 1999a). As they go

through a day, symptoms triggered by fragrances, hairspray, vehicle exhaust,

foods and medications pile up so they feel sick most of the time. No one

cause can be isolated because there's too much background noise, and

patients often underestimate the number of exposures that affect them. This

problem is not altogether new. German researchers described similar

intolerances in chemical weapons workers after World War II (Spiegelberg,

1961). Nearly 20 percent of agricultural workers on a California registry

for organophosphate pesticide poisoning (Tabershaw and , 1966)

reported that even a " whiff " of pesticide made them sick with symptoms like

those of the Gulf War veterans, as did dozens of government workers a decade

ago, after the EPA headquarters became a " sick building " following

remodeling (EPA, 1989). Similar outbreaks of chemical intolerances have been

reported in more than a dozen countries (Ashford et al, 1995). These

observations suggest that we may indeed be dealing with an entirely new

mechanism for disease, one which has been referred to with the acronym

" TILT " , or " Toxicant-induced Loss of Tolerance " (, 1996, 1997, 1999).

Any one toxicant appears capable of initiating this process. TILT involves

two steps, initiation and triggering (Ashford and , 1998): (1) First,

a single acute or multiple low-level exposures to a pesticide, solvent or

other chemical causes loss of tolerance in a subset of those exposed; (2)

Thereafter very low levels of common substances can trigger symptoms -- not

only chemicals, but various foods, medications, alcoholic beverages and

caffeine. Symptoms involve several organ systems. These intolerances are the

hallmark of TILT, just as fever is the hallmark symptom of infectious

diseases. Over the past several years, the finger has been pointed at a

number of potential causes for Gulf War Syndrome -- everything from the oil

shroud to pesticides, vaccinations, and pyridostigmine bromide. What set off

the Gulf War Veterans? The answer is " all of the above. " Exposure to any one

or any combination of these toxicants may, in fact, be capable of causing a

general breakdown in tolerance that can result in a plethora of beguiling

symptoms. We do not know exactly how this breakdown in tolerance occurs. We

do know that rats with nervous systems sensitive to organophosphate

pesticides are also intolerant of diverse drugs and have increased gut

permeability which in humans is associated with food intolerance (Overstreet

et al, 1996). This suggests the breakdown might involve the cholinergic

nervous system, which regulates processes throughout the body. How can these

people be helped? No one knows -- yet. The biggest obstacle is the symptoms

themselves, which serve as red herrings, diverting attention away from the

central problem. What we do know is that Gulf War veterans, who have come to

recognize what sets them off and then avoid these triggers, tend to improve.

We need to apply this understanding to the diagnosis and treatment of other

such veterans. The first thing that needs to be done is to set up unmasking

studies in which sick Gulf War veterans can be isolated from the exposures

that are setting them off. This can be achieved by putting them in a special

environmentally controlled hospital unit (, 1997; et al, 1997).

Once we get them to baseline, we can reintroduce things like caffeine,

perfumes, various foods, etc., and identify some of the things that cause

their flare-ups. With avoidance, it is hoped that they, too, can improve.

This combined diagnostic-therapeutic approach would eliminate much of the

confusion that is the focus of this hearing. There is no simple answer to

Gulf War illness. No single toxicant is likely to have caused it. But if we

concentrate less on the original toxicants and more on the underlying

disease mechanism, I believe we can make progress in understanding why these

people are sick and what we can do to help them.