Multiple Chemical Sensitivity And ALS
July 12 2004
Copyright 2004 Worcester Telegram & Gazette, Inc.
TELEGRAM & GAZETTE (Massachusetts)
July 09, 2004 Friday, ALL EDITIONS
SECTION: NEWS; Pg. A1
LENGTH: 1922 words
BYLINE: Elizabeth Cooney; TELEGRAM & GAZETTE STAFF
When Holy Cross football coach Dan Allen died on May 16 at age 48, he left behind a grieving wife and family, a stunned community of college athletes and unanswered questions about the nature of his disease.
Multiple chemical sensitivity was the diagnosis he and his wife, Laura Allen, disclosed last summer. But the term is controversial within the medical world and does not appear on his death certificate, or in a 23-page lawsuit filed by the family against two contractors who worked on renovating the field house on the College of the Holy Cross campus in 2001.
The man known for running on and off the field with his players since he was hired in 1996 had slowed down noticeably last year, riding a golf cart around the field more than ever before and walking with a cane. After he took a three-week medical leave in 2002, he coached home games from the Holy Cross athletic director's box, above the visitor side stands at Fitton Field.
To silence the whispers about his growing weakness, he went public in August 2003. When he said he was suffering from multiple chemical sensitivity, or MCS, he described it as a reaction to chemicals in the environment that affected his neuromuscular system.
After an initial triggering exposure, he said, any type of chemical could cause problems. He singled out mercury as one cause of concern. The year before he had 16 dental fillings removed.
''I may have some of the symptoms of certain neuromuscular diseases, but I have all the symptoms of multiple chemical sensitivity,'' he said. ''I'm hoping it's a temporary thing and in time I will regain my strength in my muscles and nerves.''
After last August, details of his disease were few. Subsequent news stories cited an imminent lawsuit to explain the family's reluctance to elaborate. Holy Cross replaced Mr. Allen as head coach after the 2003 season.
On May 6, the Allens filed a civil lawsuit in Worcester Superior Court against Martin Surfacing Inc. and Southwest Recreational Industries Inc. of Hunt Valley, Md. The suit alleged the two businesses did not protect occupants of the Holy Cross field house from hazardous substances created when the gym floor was refinished in 2001 with ''unnecessarily dangerous toxic flooring.''
The suit said fumes, chemical dust and other airborne irritants migrated into the coaches' offices.
Mr. Allen's injuries were ''toxic encephalopathy, respiratory and lung injuries, toxic poisoning, chronic fatigue, chemical neuritis, neurological abnormalities, and associated psychological and emotional distress.''
The suit seeks to recover $1.1 million in medical expenses and lost wages, as well as punitive damages.
Southwest Recreational Industries, doing business as SRI Sports, acquired Martin Surfacing in 1999. SRI sought Chapter 11 bankruptcy protection in February, after which it was sold to AstroTurf LLC of Dalton, Ga. Chuck Shamburg, a spokesman for SRI, did not return a phone call seeking comment on the lawsuit.
Ellen Ryder, a spokeswoman for Holy Cross, said the college would have no comment on the case, citing college policy regarding legal action related to employees or former employees.
Ten days after the suit was filed, Mr. Allen died. Two Holy Cross players who had been visiting him at least once a week since November said that the week before he died he was having trouble talking and breathing.
His death certificate lists ''neuromuscular degeneration'' as the cause of death; it states that no autopsy was performed.
Phone calls to Mrs. Allen at the family's Westboro home were not returned. But in an extensive September 2003 story in The Boston Globe, Mrs. Allen, a registered nurse, declared her belief that multiple chemical sensitivity was the cause of her husband's rapidly deteriorating health. She also said alternative therapies, including colon hydrotherapy with lymphatic drainage techniques and massage therapy from holistic healers, were helping him to feel better.
The Massachusetts Association for the Chemically Injured describes MCS as a class of health conditions that some people develop after exposure to chemicals in the home, at work or in the environment. Symptoms include fatigue, headache, respiratory ailments, skin conditions, gastrointestinal problems, muscle and joint pain, as well as memory, concentration and other neurological difficulties.
MCS is controversial, dividing traditional medical practitioners, who tend to be skeptical, from health care professionals specializing in environmental health, who compare it to other syndromes that were not recognized by mainstream medicine at first.
The diagnosis is not supported by the American Medical Association or the national Centers for Disease Control and Prevention, but some court cases have been won because of provisions contained in the Americans with Disabilities Act and regulations on benefits under the Social Security Administration.
The subject is so inflammable that several doctors on both sides of the issue agreed to speak only as background sources, without their names attached.
Dr. Jim Holler, chief of the emergency response and scientific assessment branch of the Agency for Toxic Substances and Disease Registry, did speak about his agency's collaboration with the National Center for Environmental Health to address the condition. Both agencies are part of CDC.
''A critical aspect toward dealing with medical conditions is coming up with a case definition. You have to define who is sick from this particular disease in order to be able to make any headway in terms of studying the disease,'' he said. ''The problem with multiple chemical sensitivity is an inability of the medical community to come up with a case definition. That's not to say it doesn't exist or is not a real condition. There's little science at this point.''
Other kinds of chemical exposures are sharply defined, Dr. Holler noted. Someone who drinks methanol, for example, can go blind because the chemical attacks the optic nerve. The picture isn't so clear with MCS, he said.
''The field is covered by anecdotal situations,'' he said. ''We don't know what the interaction is between sensitizing chemicals and the bodily function they're attacking.''
Dr. Marcie Wolinsky-Friedland, an internal medicine practitioner in Ridgefield, Conn., disagrees.
Mr. Allen became one of her patients in the summer of 2003. She would not comment on his care, but did speak in general terms about MCS, pointing to other conditions that gained acceptance slowly, such as sick-building syndrome.
''I think the issue is a heightened reactivity that develops both immunologically and neurologically, psychologically and physiologically to what can be commonplace exposures,'' she said. ''Why it occurs varies from individual to individual, having to do with our genetics, in that we have different detoxification capacities.''
The theory behind MCS treatments is that the affected person has retained toxins and become sensitive not only to that substance, but many others, following a ''kindling'' phenomenon set off by the first exposure.
Detoxification can include dietary changes, low-temperature saunas, or bile-acid techniques, attempts to promote the flow of bile to the liver, she said. Changes in the metabolic machinery of the cell are very hard to prove and assess, Dr. Wolinsky-Friedland noted.
''None of our traditional testing is effective at that. I believe ultimately it's at the level of the cell, either the membrane or the cell itself which can become inflamed or that toxins can affect,'' she said. ''In people like Dan, there are aspects of what happened with him on a cellular basis that we couldn't reverse.''
Tom Sinks, an epidemiologist at CDC's Agency for Toxic Substances and Disease Registry, said that while there is no consensus on a definition of MCS, patients should still be treated appropriately.
''Those people have some form of condition that is affecting their health, either mental or physical, and it is important for clinicians to recognize that people who bring this type of symptoms have a need for treatment,'' he said.
Just as the CDC agencies found no agreement on definition for MCS, they also found that therapies aimed at treating MCS have not been proven effective. The CDC report advised that ''persons should not be offered ineffective, costly or potentially dangerous treatments.''
Dr. Edward W. Boyer, director of medical toxicology at UMass Memorial Medical Center and a lecturer in pediatrics at Harvard Medical School, sees MCS in his practice.
''Multiple chemical sensitivity is an extraordinarily frustrating diagnosis -- both for patients and clinicians alike,'' he said. ''The symptoms are so vague and there are no objective findings of disease. If they complain of something like rashes, it's rare if ever that an independent, objective observer ever sees the rash.''
The evaluation for MCS involves environmental and airway testing after other causes of disease have been ruled out, he said. When similarities are drawn between MCS and sick-building syndrome or new-carpet syndrome, his response is that medical abnormalities resulting from specific volatile hydrocarbons can be measured.
''Multiple chemical sensitivity and sick-building syndrome are cut from the same cloth. Can people get sick? Yes. But the overwhelming number of people who come in have no objective findings of illness,'' he said. ''When I see someone and treat them the frustration they feel is because there's no objective sign of illness. It's tough to get better when you continually have to prove that you're sick.''
Dan Allen became sick and died, and no doubt experienced skepticism about his explanation for his illness. Both Dr. Boyer of UMass Memorial and Dr. Holler of CDC said they had not heard of a death attributed to MCS.
The cause of death entered on Mr. Allen's death certificate -- neuromuscular degeneration -- is a broad term that could include such neurodegenerative disorders as amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. ALS attacks nerve cells in the brain and spinal cord, leading to muscle weakness in the arms and legs and difficulty speaking, swallowing and breathing. Eventually all muscle function is lost.
Chemical exposure, including what has been alleged in the lawsuit, can also cause neurological damage. Preliminary studies showing a greater than expected incidence of ALS in Gulf War veterans, for example, indicate chemical exposure is associated with a neurological disease.
The question is whether chemical exposure hastens progression of a disease that someone is already predisposed to get. An interaction between a gene and exposures to pesticides has been implicated in people who have Parkinson's disease, for example.
The thinking behind such a connection hinges on the death of brain cells, or neurons. Chemical exposure kills neurons. By definition, neurodegenerative disease also kills neurons. So someone who has a neurodegenerative disease or is predisposed by heredity or other factors to develop it, would have fewer neurons to lose in the presence of a chemical. The chemical exposure doesn't cause the disease, but accelerates its development.
The lawsuit seeks a jury trial, in which details of Mr. Allen's medical record may become public. Some doctors said the lack of an autopsy makes it difficult to determine why he died.
And for the foreseeable future, at least, MCS remains a lightning rod for debate, in life and death.
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