When the environment can kill you

People with chronic immune disorder struggle to live in modern world

For years patients such as Beth Bradach were greeted with skepticism in the medical community, and many people today dismiss the disease as being in patients' heads, said Gail Kansky, president of the National CFIDS (chronic fatigue and immune dysfunction) Foundation in Needham, Mass.

But new findings by two independent research groups have identified a virus, Parainfluenza Virus-5, in 96 percent of blood samples and 91 percent of spinal fluid samples from patients with the disease.

The virus targets a patient's immunity by destroying a critical protein, Stat 1, found in a type of white blood cell that is responsible for the production of interferon, research by three research groups found. Interferon helps fight viruses and bacterial infections.

Patients are often unable to fight off infections and environmental stresses can trigger serious illness. Tests for a neurotoxin have also proved positive in 95 percent of patients, according to research. Patients may also develop indolent leukemia and heart problems that lead to heart failure and early death.

Chronic fatigue and immune dysfunction (CFIDS) and myalgic encephalomyelitis (ME) are auto-immune diseases that cause overwhelming and incapacitating central nervous system fatigue along with cognition problems, low-grade fevers and other flu-like symptoms. Painful lymph nodes, weight gain or loss, muscle weakness, calculation difficulties, spatial disorientation, night sweats, headaches of a new type, balance problems and dizziness, intolerance of bright lights, twitching muscles, rapid heart action, irritable bowel, worsening of premenstrual symptoms, seizure activity, breathlessness, visual disturbances, mood swings, sleep disorders are some of the symptoms, according to the National CFIDS Foundation.

A hallmark of CFIDS/ME is the "push-crash" phenomena where mental or physical activity is followed, sometimes a day or more after, by an exacerbation of symptoms.

An estimated 1 million adults and an unknown number of children have the disease, according to researcher Leonard A. Jason in his paper, "A Community-Based Study of Chronic Fatigue Syndrome" (Archives of Internal Medicine, October 1999).

Patients with CFIDS and myalgic encephalomyelitis are not just "sensitive" to chemicals, smoke and other contaminants. Patients' bodies are unable to detoxify in the way that people without the illness can, according to Dr. Randy S. Baker, medical director of the Pacific Center for Integral Health in Soquel, Calif., who has treated many patients with CFIDS and chemical toxicities and has been Bradach's doctor for six years.

"A little tobacco smoke 100 feet away can make them ill. Just walking by the laundry room at their apartment building and passing by the fabric softener can make them sick," he said.

Providing housing for the chemically sensitive patient can be challenging, as exemplified by the conflict between Bradach and the Palo Alto Housing Corporation.

Baker said the best alternative for his patient is to move her to a small house where she will not be surrounded by toxins generated by other people or to take up her proposal for a building for the chemically sensitive.

The need for housing for the chemically sensitive is great. The 11-unit Ecology House in San Rafael for low-income, chemically-sensitive tenants has a long waiting list of people from throughout the country searching for such housing and there is little available, although some cities and states are working on suitable housing, including Kentucky.


Like this comment
Posted by Taffy Todd
a resident of another community
on May 12, 2008 at 8:37 pm

Thank you for this article. I have lived with this illness for 12 years. (I'll spare you the litany of ills, a lot are in the article.) It is so important to get this information to those it can help; and it's so important to educate the public regarding CFIDS/ME. There have been plans in past years for co-housing. I know of one in South Carolina. Seems to me California could easily adopt an idea like this, and probably already has. By the way, I picked the article up via the internet. I live in far nothern Vermont and the story is is just as important here.

Like this comment
Posted by Walter E. Wallis
a resident of Midtown
on May 13, 2008 at 1:18 am

People routinely have moved to more salubrious climes to escape asthma, to reduce the rigors of TB or, in my case, to get out of the hot sun. Remember, a few years ago stomach ulcers and erectal disfunction were dismissed as "all in the head."
In the present case, it would seem that variations of 'the boy in the bubble" while seeking a cure would be appropriate.

Like this comment
Posted by just thinkin
a resident of South of Midtown
on May 13, 2008 at 1:32 pm

Who's paying the rent on the apartments next to her that are vacant for her sake?

Like this comment
Posted by Renee Cochran
a resident of another community
on Jun 9, 2008 at 9:08 am

THANK YOU. It is so important for everyone to realize the truth to this article. We are constantly looking for a safe place in an unsafe environment. It is a terrible thing when everywhere and everything makes you sick. I have had MCS(and other immune disorders) for about 5 years. I will spare you the litany of ills as well, the short list--asthma, ringing ears, pounding head, burning eyes, racing heart, anemia, dizziness, joint and muscle pain, and complete utter exhaustion. If everyone had to experience 1 day of our suffering, we would not have to beg others to believe. I live in Atlanta, GA.

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