Brain damage? That’s the latest theory from researchers trying to explain Gulf War illness. I’m skeptical of the new study and disappointed because medical research again is missing the point.

Thousands of Gulf War veterans have been sick and undiagnosed for more than decade as doctors grope for answers. No one can convincingly explain their many symptoms, which include pain, fatigue and cognitive impairment.

Things won’t change until medical science acknowledges that we are dealing with an entirely new mechanism of disease. We recognize how germs and immune-system failures cause disease. Now we need to recognize that chemical exposures cause disease, too.

The Gulf War veterans are suffering the effects of chemical intolerance probably brought on by one or many such exposures in the war zone. I said so in congressional testimony as far back as 1999.

Wartime in the past has opened new thinking on the origin of disease. The germ theory, for example, emerged from the Civil War. Photo: Library of Congress.

My conclusions are based years of study. I also served as the environmental medical consultant to the Department of Veterans Affairs regional referral center in Houston for seven years in the 1990s. I’ve evaluated dozens of ill veterans. They have what is called TILT, or Toxicant-induced Loss of Tolerance.

A single exposure or repeated chemical exposures can cause TILT. People with TILT suffer from chemical intolerances that can impair cognitive abilities and cause multi-symptom illnesses.

With the Gulf War veterans, it doesn’t matter so much which exposure caused their breakdown in tolerance — be it pesticides, smoke from the oil fires or pyridostigmine bromide pills. Those things have long since left these veterans’ bodies. It’s the aftermath of these exposures — the new-onset intolerances to low-level chemical exposures — which appear to be perpetuating their symptoms. In some cases, it may be difficult to sort out individual intolerances, or “triggers,” because of a phenomenon called “masking.” This occurs when individuals are reacting to so many exposures that they have overlapping symptoms.

How can we help these people? The single most important task is to sort out and “unmask” the causes or triggers for their symptoms. This requires an environmental medical unit, or EMU. Congress once endorsed EMU research for the Gulf War veterans but never funded it. Only a few EMUs exist in the world. They are environmentally controlled in-patient hospital units designed to isolate patients from exposures that set them off.

Once we get patients to baseline, we can reintroduce things like caffeine, foods and various substances to identify what causes their flare-ups.

This is not the first time doctors have been baffled by wartime disease. During the Civil War, doctors faced a similarly mysterious “syndrome” characterized by fever. Hundreds of thousands of soldiers died. The doctors did what good epidemiologists do today. They classified the cases. Since the hallmark symptom was fever, they classified the cases by fever type — remittent, intermittent, or relapsing. In doing so, they unknowingly lumped together dozens of unrelated illnesses — everything from typhus and typhoid to malaria and tuberculosis.

Today we face this same situation with Gulf War veterans, only this time the hallmark symptom is not as simple as fever. It’s newly acquired intolerances these veterans have been experiencing since the end of the war.

Scientists who discovered the Higgs boson chased shadows and silhouettes for months. Enduring skepticism, they finally produced proof that led on March 14, 2013, to official confirmation of the mysterious and coveted “God particle.”

The quest “was like seeing a person in the fog — you knew there was a person there, but you weren’t sure who it was,” Andy Parker, a Cambridge professor and Higgs investigator, said.

Physics: There are 12 different matter particles — 6 quarks which make up protons and neutrons and 6 leptons, which include electrons and neutrinos. These are the basic building blocks of all matter. Then there are the 4 fundamental forces of the universe — gravity, electromagnetic, strong and weak forces. Each of the fundamental forces is thought to have its own boson, or carrier particle. The Higgs boson may transfer mass and it gains mass by passing through the invisible Higgs field, which extends across the entire universe.

Parallel to these important theories in physics, in medicine there are thousands of different named diseases but a very limited number of theories of disease under which they fall: the germ theory, immune theory and carcinogenesis (mutations leasing to cancer) being most recognizable by laymen.

Toxicant-induced Loss of Tolerance, like the Higgs boson, has remained in the shadows awaiting confirmation by the right researchers with the right tools. It is a transformative disease paradigm hidden by the ever present but elusive phenomenon “masking.” Masking is something we all experience but most are unaware of. It is related to addiction: If we are unmasked and go into withdrawal, e.g. from caffeine, favorite foods or alcohol, we may deliberately ingest a little hair of the dog that bit us to curtail unpleasant withdrawal symptoms.

What exactly is TILT? TILT is not simply an acronym — like the Higgs boson, it is a radical discovery that has the potential to transform medical science and neighboring fields of addiction, toxicology, psychology/psychiatry. Theories of disease affect how we think about underlying causes for illness, what researchers study, and suggest new ways to diagnose and treat conditions as diverse as fever, cancer and asthma. TILT joins a tiny handful of existing theories of disease, taking its place alongside the germ theory (infection), the immune theory, carcinogenesis and endocrine disruption. Currently we are in the germ theory stage in terms of our understanding of TILT, somewhere near the same stage as the germ theory of disease was in the 1890s or the immune theory of disease in the 1960s before the discovery of IgE.

Why has TILT come to light so late in human history — 120 years after the germ theory and 50 years after the immune theory of disease? It’s really no surprise: The causative agents for the germ theory and the immune theory have been with us since humankind began. On the other hand, the synthetic organic chemicals that have led to the 2-step TILT process are new since World War II. Doctors today don’t recognize the huge impact of indoor air. We spend 90 percent of our day indoors and exposed to tens of thousands of evolutionarily novel synthetic organic chemicals.

In science new theories emerge when we observe new patterns that point to an underlying structure we do not understand. Compelling anomalies spur the search for new theories. Observations that don’t fit prevailing paradigms point to the existence of new rules. A period of uncertainty and debate precedes the emergence of a new paradigm.

As with the Higgs boson, enough evidence currently exists to dispel doubts about TILT, but scientific inquiry is the key to advancing our understanding.

Millions of dollars from the BP Claims Fund are being poured into healthcare efforts in the wake of the Deepwater Horizon disaster “to expand access to healthcare in underserved communities,” for “behavioral and mental health needs,” to “train community health care workers on peer listening, community resiliency and other related issues,” and to “expand and improve environmental health expertise, capacity and literacy.”

And yet, not one dime has been allocated to study how the toxic exposures resulting from this disaster have rendered thousands of workers and residents chemically sensitive and suffering from the same disabling multi-system symptoms that afflict the hundreds of thousands of American soldiers who suffer from what has become known as Gulf War Syndrome.

What we are witnessing, in fact, is the emergence of an entirely new disease mechanism that has grown out of the post-World War II petrochemical age and rendered millions of Americans who have suffered toxic exposures chronically ill. And the only way to help victims of toxic exposures and those in the future is to go after this mechanism.

How the settlement landed so far off the mark is anyone’s guess. One $14.4 million grant will send mental health counselors to the Gulf Coast.

People along the Gulf Coast are reacting to this news of misdirected largesse. As a reader of the Mobile (Ala.) Press-Register posted on the newspaper’s website, “Who will contain the money spill?”

Related link: My earlier message “To Gulf Oil Spill Responders: What You and Your Doctors Need to Know About TILT.”

Responders to the Deepwater Horizon spill, like the clean-up workers in the Exxon Valdez accident 20 years ago, have long been reporting chronic health problems associated with TILT, including multi-system symptoms (fatigue, sleep problems, headaches, digestive difficulties, and problems with memory and concentration) as well as new intolerances for everyday exposures that never bothered them before.

An article from the Huffington Post in March 2012 describes how doctors along the Gulf Coast are routinely treating clean-up workers and residents for chemical exposure and other problems that they blame on the spill. The article includes statements from a physician who uses the QEESI diagnostic questionnaire, Michael Robichaux, an otolaryngologist in Raceland, La., outside New Orleans.

Dr. Robichaux said he has treated 50 people for a range of health problems that he believes were caused by exposure to chemicals from the spill. “The illnesses are very real, and the people who are ill are apparently people who have sensitivities to these substances that not all of us are sensitive to,” he told the Huffington Post.

Patients suffering exposure symptoms may feel dizzy or nauseated around engine exhaust, cleaning chemicals, fragrances, or ill after meals, eating certain foods or even drinking one beer or glass of wine. These new intolerances are the hallmark symptom of a disease process called “TILT,” or “Toxicant-induced Loss of Tolerance.” We know that even so-called “safe” levels of exposure to toxic petroleum-based chemicals like those in the Gulf can initiate TILT. Once TILT develops, it is very difficult to treat, but TILT can be prevented.

To find out whether you may be susceptible to TILT or to track your symptoms, take the QEESI — a validated and published questionnaire I developed. You can download the QEESI at no charge under the “Publications & Presentations” tab.

Cases of childhood autism are up sharply, and there’s reason to wonder whether the number of cases is much higher than we suspect.

The Centers for Disease Control and Prevention reported in March that autism cases in the United States had increased 78 percent since 2002. That’s 1 in 88 U.S. children (1 in 54 boys and one in 252 girls), or about 1.1 percent of children.

A few weeks later, in May, a new study from South Korea reported that 2.3 percent of children there have autism. That’s twice the prevalence that the CDC has reported in the United States. Why such a difference?

The Korean study, lead by Yale and George Washington universities, counted cases differently. Researchers rigorously assessed individual children ages 7 to 12 in a community of 488,000 to identify known cases. In contrast, the CDC relied upon records of existing cases kept by health care and special education agencies.

Regardless of measuring methodologies, autism spectrum disorder now affects more children than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

Why is autism on the rise? Better diagnosis alone can’t account for it.

The most cogent scientific explanation is also my greatest concern: chemical exposures. Chemically susceptible mothers who do not know they are susceptible and who therefore do not avoid exposures are at particular risk. They are more likely to have babies who share their susceptibility genes, and be raised in homes and environments in which exposures are relatively high compared to earlier generations. It’s a case where genetics loads the gun and the environment pulls the trigger.

Women who know they are chemically intolerant will work hard to help their families avoid things like pesticides, solvents, combustion products and other exposures that could lead to neurodevelopmental difficulties. This is because they are personally more aware of the adverse effects of these exposures. They will want to protect their children. However, women who are highly “masked” are less likely to avoid exposures. Although they may have multiple intolerances to foods, everyday chemicals and medications, they may be unable to tell which exposures are causing symptoms because triggering exposures occur throughout the day and their symptoms overlap in time.

The use of petroleum-based chemicals has risen dramatically in recent decades. These substances can seriously affect the health of susceptible people. With intense or long-term chemical exposures, these individuals can acquire Toxicant-induced Loss of Tolerance, or TILT. The problem is, currently, it is not always possible to know beforehand who is susceptible—before the parents build a new home or remodel their existing home for a new baby, hire an exterminator to keep bugs away and install air fresheners throughout the house so the home smells nice for baby.

New research suggests the children of chemically intolerant individuals inherit some of their parents’ same susceptibility to developing life-changing chemical, drug and food intolerances if sufficient exposure occurs (e.g., to pesticides, chemicals associated with new construction). The person develops TILT, or as some affected persons refer to the process, they become “TILTed.”

Most but not all chemical exposures are easy to identify by odor. Complex mixtures of chemicals emitted from everyday products used for home construction and furnishings, for example volatile organic chemicals outgassing from new carpet, adhesives, fragrances, etc., can be trapped inside our energy efficient, tightly constructed homes, schools and workplaces. These exposures can be hard to avoid and because of “olfactory adaptation,” our ability to smell complex low-level mixtures is quickly lost—within minutes of entering a home. Think of homes you may have visited while touring builders’ open houses: in your first few breaths you can smell the air, but after several breaths your nose adapts and you are no longer aware. A useful exercise can be to spend several days away from a suspect environment and then return, noting any odors that are apparent within the first breath or two. Or ask neighbors or friends what your house smells like — e.g ., mothballs, new carpet, a fragrance, natural gas or a mixture of substances?

Many of the same environmental exposures that initiate TILT can also interfere with neurodevelopment in a fetus. The harm can start as early as the first month of pregnancy. That’s the stage when the neural tube forms but before most mothers know they are is pregnant.

There are important relationships between autism, genes and exposures. Humans have different thresholds for becoming chemically susceptible. These differences are normal and not defects. These differences are not new. What is new? Our exposures.

Since World War II, the petrochemical era has ushered in countless new chemical exposures. Many of these have found their way into our building interiors where Americans spend on average 90 percent of their day. A mother and infant may spend even more time at home. Not only do indoor exposures vary from house to house and workplace to workplace, but there can be as much as a 10,000-fold difference between individuals in our ability to detoxify and eliminate certain substances from our bodies.

The rise in autism spectrum disorders seems to follow the rise in petrochemical usage, and arouses enough suspicion to justify immediate research.

The need for research is great, and future studies need to focus on potential environmental causes and especially the indoor environment—an area that falls between the cracks in terms of government research funding. There is a saying: “There are no genetic epidemics.” If a condition has become as prevalent as autism, then research must examine potential environmental contributors — and quickly. Although genes play a role in terms of individual susceptibility to exposures, it is the exposures that are the problem, not our genes! In March, Mark Roithmayr, president of the influential organization Autism Speaks, which helped fund the South Korean study, called for a comprehensive national strategy to address the autism epidemic. Among other things, he cited a need to:

• Fund more basic science uncovering the genetic underpinnings of autism.
• Fund more environmental research detecting the causes of autism.
• Accelerate the funding and development of effective medicines and treatments.

I agree with his statement. There are many different types of autism. Autism is an umbrella diagnosis, one that has many potential root causes. However, the “chemical connection” seems be one of the most promising paths toward an understanding of autism spectrum disorder.

Chemical intolerance contributes to the illnesses of 1 in 5 patients but the condition seldom figures in their diagnosis, according to clinical research published July 9 in the journal Annals of Family Medicine.

(Note: I was a co-author of the paper, which is available from the Annals of Family Medicine website. The study struck a national nerve, and it has been reported widely in the news media, including highly-read Medscape.com, which ran an excellent account. You’ll need a free Medscape login and password to view it. Other accounts are published at Science Daily and Fox News.)

Here’s a summary sent to the media:

Chemical intolerance contributes to the illnesses of 1 in 5 patients but the condition seldom figures in their diagnosis, according to clinical research published July 9 in the journal Annals of Family Medicine.

Clinical tools are available to identify chemical intolerance but health care practitioners may not be using them, said lead author Dr. David Katerndahl, professor of family and community medicine at the University of Texas Health Science Center at San Antonio.

The study’s authors said physicians need to know how chemical intolerance affects certain people and understand that conventional therapies can be ineffective. Some patients would improve by avoiding certain chemicals, foods and even medical prescriptions, the authors said.

Patients with chemical intolerance go to the doctor more than others, are prone to having multi-system symptoms and are more apt to have to quit their job due to physical impairment, the authors said.

The study involved 400 patients who gave personal health information while waiting to be seen at primary care clinics in San Antonio. The researchers asked the patients to respond to 90 questions about their illnesses, mental health and ability to function.

In the end, the authors said, 20.3 percent of the patients questioned met the scientific criteria for chemical intolerance.

Researchers surveyed patients with chronic conditions such as allergies, asthma, diabetes and heart disease. They excluded patients who were at the clinics for acute conditions such as earaches, flu or bone fractures.

The origins of chemical intolerance have been the subject of much speculation, the authors acknowledge, but the condition is also understudied. People with chemical intolerance, or “CI,” are highly sensitive to common substances such as cleaning products, tobacco smoke, fragrances, pesticides, new carpet and auto exhaust.

“Apart from the debate over causality, the fact that so many patients meet the criteria for chemical intolerance holds particular relevance for primary care providers,” said Dr. Katerndahl.

Chemically intolerant individuals often have symptoms that affect multiple organ systems simultaneously, especially the nervous system. Symptoms commonly include fatigue, changes in mood, difficulty thinking and digestive problems.

Study co-authors are Dr. Claudia S. Miller, professor in environmental and occupational medicine, vice chair of family and community medicine, and director of the South Texas Environmental Education and Research (STEER) Program, among her roles; Dr. Raymond F. Palmer, associate professor of family and community medicine at the University of Texas Health Science Center at San Antonio; and Dr. Iris R. Bell, professor emeritus in the Department of Family and Community Medicine at the University of Arizona College of Medicine and research professor in the College of Nursing at the University of Arizona.

An added comment: Healthcare professionals as well as the public can assess chemical, food, drug and other intolerances using the QEESI, the Quick Environmental Exposure and Sensitivity Inventory, which I developed. It is available free for download.

I presented April 18 at the National Academy of Sciences Workshop “Biological Factors that Underlie Individual Susceptibility to Environmental Stressors and Their Implications for Decision-Making.”

The proceedings are available by recorded webcast so you can view and listen to the speakers. View the webcast at:

http://www.tvworldwide.com/events/nrc/120418/
(Supply your email adress to log in.)

The title of my presentation was “Human Variability in Chemical Susceptibility (Intolerance/Sensitivity): Research Findings to Date and Their Implications for Future Study Design.” I’ve posted my presentation for your review.

I was asked to describe our findings from the QEESI, the Quick Environmental Exposure and Sensitivity Inventory, and to discuss the use of EMUs, environmentally-controlled medical units, for research. Here is a synopsis:

“The QEESI is a validated research tool widely used to identify and characterize chemically intolerant individuals and groups. Results from these studies provide evidence for broad endogenous variability in susceptibility and point to the complex nature of susceptibility in humans, with susceptible persons generally reporting adverse responses to chemically diverse substances, including foods and drugs. Future investigations to assess human variability that is ‘endogenous or biological’ will benefit from the use of EMUs. Such studies will enable us to correlate symptoms and clinical measures (such as pulmonary function and EEG measures) with changes in the ‘-omics’ in real time at key points, i.e., when subjects enter the EMU, once they have achieved a clean baseline, and pre- and post- low level challenges.”

The QEESI is available free for download.

Details about the workshop are at:
http://nas-sites.org/emergingscience/workshops/individual-variability/

The Pulitzer Prize-winning publication ProPublica drew attention in May to the lack of centralized data on implanted medical devices. Where can patients find out when a pacemaker, breast implant or artificial hip, for example, goes bad?

Not from the U.S. Food and Drug Administration, as ProPublica’s story describes. Prescription drugs have unique codes the government can use to track problems. But implanted devices? No such luck.

And there’s an unexplored dimension to the implant question: Implants are “xenobiotics,” petrochemical products that pose particular concern for people who may be more chemically susceptible.

I testified before the FDA in 2005 about the dangers of implants, and cited evidence from my own research.

Over a decade ago, in 1999, along with co-author Thomas J. Prihoda, PhD, I reported on a group of patients who received implants and subsequently developed chronic health problems and chemical intolerances that they had never experienced before.

Although inserting implants certainly differs from inhaled exposures to pesticides or air contaminants in a sick building, for susceptible individuals it seems like the body doesn’t care whether the exposure is exogenous (like air pollutants) or endogenous, like an implant. The consequences can be similar — chronic, multi-system symptoms and intolerances for foods, alcoholic beverages, caffeine, everyday chemicals like cleaning agents, engine exhaust, fragrances, and even medications like antibiotics or antidepressants. Once people become ill, not just the implants, but everyday exposures like these can trigger symptoms and perpetuate illness.

We obtained exposure histories from patients who became ill following an “exposure event” — ill veterans from the first Gulf War in Iraq, people exposed to pesticides or remodeling chemicals, and patients who had received an implanted medical device. The groups shared illnesses marked by multiple symptoms and new intolerances — the hallmark symptom of the illness process Toxicant-induced Loss of Tolerance (TILT).

Patients with implants reported symptoms affecting multiple organ systems which frequently involved cognitive and mood difficulties.

The implant group included 87 individuals, 97 percent women, mean age of 50. Most had received breast implants or temporomandibular joint (TMJ or jaw) implants. Two-thirds said their device had ruptured. Nearly all of those reporting difficulties said their illnesses had affected their ability to work. Their most pervasive symptoms involved muscle and joint problems.

TILT is often overlooked in implant patients when doctors don’t recognize it. There is a saying in medicine: You can’t make the diagnosis you don’t think of. And many doctors don’t know that multiple symptoms and intolerances point to TILT. In medical school, we are often taught that the more symptoms a patient reports, the less likely there is anything to them — in other words, the problem is psychogenic. While many patients suffer from psychological symptoms such as depression, anxiety and cognitive difficulties, even confusion, it is important to remember that psychological symptoms are not necessarily psychogenic. Many physical illnesses can cause similar symptoms, for example, autoimmune diseases, multiple sclerosis and Lou Gehrig’s disease (ALS).

As I wrote in the 1999 study, “The fact patients reported such diverse symptoms led some physicians to conclude that none of them rises to the level of a medically identifiable syndrome. Nor are these conditions explained by current, generally accepted mechanisms for disease.”

I developed the QEESI, or Quick Environmental Exposure and Sensitivity Inventory, several years ago to help doctors and patients make sense of multiple symptoms and measure the potential for chemical intolerance.

Persons who score high on the QEESI, a validated and published screening instrument, may be at greater risk if they receive an implant or have other exposures, e.g., anesthetics, drugs, pesticides, remodeling of their home or workplace, etc. To determine whether you may be at increased risk of developing TILT, you can take the QEESI to gauge your own susceptibility or to document changes in your symptoms and intolerances as a consequence of an implant or its removal. Many individuals do report improvement in symptoms once their implants are removed.

As for the FDA, the regulatory agency has done poorly in its role of gathering scientific data about the safety of implants. Dr. Diana Zuckerman, president of the National Research Center for Women and Families, a research and education group, told an expert panel of the FDA in 2011 that some breast implant manufacturers had failed to carry out the FDA’s own recommended studies of post-implant patients. One of the FDA’s chief scientists, Dr. William Maisel, later acknowledged shortcomings when questioned by the New York Times.

Commenting on breast implants in her blog, Dr. Zuckerman added, “Silicone implants are considered biocompatible, which means that most patients won’t have an allergic or autoimmune response. But, that doesn’t mean that nobody will. In fact, the implant companies intentionally excluded women with autoimmune histories from their studies because of concern that the women would have medical complications that would jeopardize getting FDA approval.”

When I’ve testified before the FDA on the results of our study, I’ve been concerned with the fact that parents may purchase implants for their daughters for their “Sweet 16” or high school graduation. Adverse events include scarring as well as chemical intolerances in a subset of individuals. The problem is, that before an implant, there is currently no way of knowing who may be more susceptible to developing health problems or disfigurement. The QEESI might at least make women more aware if they are susceptible to petrochemical exposures, including implants. I’ve heard of women who already had been diagnosed with an autoimmune disease going to see a doctor to get implants. No doctor should agree to place breasts implants in women with this history.

Also, I’m aware of young women borrowing money to get an implant. However, if they become ill, insurers may not pay to have them removed. So it’s not just the cost of the implant, but the unplanned costs if removal becomes necessary.

Is there a way to make “green” buildings as friendly to people as they are to the environment?

I had the opportunity to discuss indoor air quality and chemical susceptibility with some of the nation’s leading architects and building technologists at a recent conference about building standards. I was one of 13 guest speakers at the conference hosted by the School of Architecture at the University of Texas in Austin.

Indoor air has a profound effect on people’s health, and my goal was to persuade the group that poor quality air makes some people sick. My message was simple: If you protect the most vulnerable people, you will protect everyone.

I suggested adding a new level to the coveted LEED building certification. The new certification level would recognize buildings that assure excellent indoor air quality.

Certification under LEED, short for “Leadership in Energy and Environmental Design,” reflects a rating system for the design, construction and operation of green buildings. Developed by the U.S. Green Building Council, it is intended to provide building owners and operators with a framework for identifying and implementing practical and measurable green building design, construction, operations and maintenance solutions. Buildings receive LEED certification based on five categories of construction quality. I proposed a sixth: indoor air quality. A building can be LEED certified and yet have indoor air exposures that pose major health problems for a building’s most susceptible occupants, such as the chemically intolerant, those with asthma, pregnant women, etc.

Americans spend 90 percent of their day indoors so architects and builders bear a major responsibility for the quality of indoor air.

Who is most vulnerable? Children, pregnant women, and more susceptible adults (people with asthma, allergies, or chemical intolerance). At any given time, of 100 people, 3 are pregnant or will become pregnant within a year, 7 are children under the age of 5 (another 17 are still under the age of 18 and the brain continues to develop into the early 20s!), 7 have asthma, 20 have
allergies, and 15 are chemically intolerant.

LEED certification does not protect the most vulnerable building occupants from indoor air contaminants such as chemicals, particles, allergens, and microbes. Although indoor environmental quality requirements are part of LEED certification and builders and owners can earn points by taking additional measures that can improve indoor air quality, the levels of certification such as “silver,”"gold,” or “platinum” are insufficient to protect the most vulnerable building occupants. A new designation, perhaps “LEED Diamond,” should be introduced with mandatory criteria to ensure excellent indoor air and protect all building occupants.

My presentation is available in .pdf and PowerPoint.

Scientists, healthcare professionals and especially people with chemical intolerance have achieved a victory that took years to win. In a nutshell: High-level U.S. policymakers now say chemical intolerance needs serious investigation.

The recently concluded “National Conversation on Public Health and Chemical Exposures,” sponsored by several government agencies, issued a detailed statement in October 2011 that summed up two years of deliberation among hundreds of experts. The statement, in brief, calls for intensified work to understand chemicals and their health effects.

I think the statement will influence health policy and promote new research and clinical inquiry. Progress in the science, diagnosis and treatment of chemically-induced illness has been painfully slow. I’m excited to see this new development.

The National Conversation, in its final statement, urged intensified study of:

• Health effects of chemicals, including low-dose, multiple and cumulative exposures
• Individual susceptibility, including the interplay between genes and environment
• Community vulnerability and disproportionate effects from past exposures
• Effectiveness of interventions to protect public health

To me, one of the most important recommendations called for human studies using environmentally controlled research units. It said: “Studies of variation in susceptibility as manifested by chemical sensitivity/intolerance, including clinical studies conducted in facilities adequate for this purpose, are needed.”

This recommendation for research facilities first appeared in a report commissioned by the State of New Jersey that I co-authored in 1989 with Nicholas A. Ashford, Ph.D., J.D., professor at Massachusetts Institute of Technology, as well as in subsequent editions of our book Chemical Exposures: Low Levels and High Stakes.

Here is an excerpt from recommendations in the National Conversation’s report “Chapter 3: Achieve a More Complete Scientific Understanding of Chemicals and Their Health Effects”:

“Recommendation 3.5: Improve understanding of individual susceptibility to chemical exposures.”

“Those seeking to protect the public from the adverse effects of chemical exposures need a better understanding of variations in individual susceptibility to help prioritize prevention and treatment efforts. Some individuals in certain groups (e.g., developing fetuses, children, pregnant women, the elderly, disabled persons, persons with chronic diseases, persons with previous heightened sensitivity to chemical exposures) exhibit unique susceptibility to chemical exposures. Some of this variability in susceptibility may be related to genetic variation, acquired epigenetic changes, health effects from previous exposures, or nonchemical stressors. To improve the understanding of these variations, funding agencies should continue to support research into mechanisms of variation in individual susceptibility and the role of such variations in the observed burden of environmentally related disease. Studies of variation in susceptibility as manifested by chemical sensitivity/intolerance, including clinical studies conducted in facilities adequate for this purpose, are needed. Population-based studies of exposed groups may yield additional insights.”

“Further, the federal government should support an existing working group or convene an interdisciplinary group of scientists and clinicians from federal agencies, NGOs/public interest groups, industry, academic institutions, and representatives of affected patient communities to develop a research agenda on chemical sensitivity/intolerance.”

The National Conversation was a two-year collaborative process that produced an action agenda in June 2011 on new ways to protect the public from harmful chemical exposures. In October 2011, the leadership issued its final recommendations at an implementation strategy session in Washington, D.C., hosted by the American Public Health Association (APHA).

I chaired the National Conversation’s subgroup on Individual Susceptibility, and served as a member of the larger Scientific Understanding Work Group, one of six working groups assigned to various aspects of chemical exposure. The work group issued a full-text action agenda.

As part of their mission to advance the public’s health, the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry supported the National Conversation. Dozens of government agency, nonprofit and industry experts and thousands of members of the public were involved in developing the recommendations.