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CFIDS & MCS Activism
Myths and Facts About Chemical Sensitivity

How to Be Fragrance Free

Buying Fragrance Free Products

The Ever-Unstable World of Labels

Welcome to Camp Nostink

PDF Downloads:

How to Be Fragrance Free

Myths and Facts About Chemical Sensitivity

How to Buy Safe Products

Links


Antidote Radio

Dallas Ft. Worth CFIDS Page on Dr. Paul Cheney

Canadian Clinical Case Definition of CFIDS

A Hummingbird's Guide (best patient-run CFIDS/ME site)

The CDC's site

SPECT scan of MCS patient's brain before and after perfume exposure

Toxics Information Project

Health Care Without Harm

The ME Society of America

Information on CFIDS Fatalities

About CFIDS

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), also known as chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), is a debilitating chronic illness that strikes more often in women than breast cancer, lung cancer, or HIV infection. Once derided as the "Yuppie Flu," CFIDS is actually a multi-systemic illness from which only 4-12 percent of patients ever fully recover. 43% of its victims are unable to work or attend school, making it more functionally disabling than comparable conditions like multiple sclerosis or lupus. A great percentage of patients, consigned to their bedrooms, disappear from the fabric of society, lending literalness to the notion of invisible disability. CFIDS causes neurological problems, brain dysfunction, immune irregularities, cardiac problems, endocrine malfunction, and disruption to nearly every bodily system, leaving its victims with a relentless, constant cascade of disabling symptoms. For an excellent symptom list, visit A Hummingbird's Guide.

From Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome: Dr Dan Peterson found that "CFIDS patients experienced greater 'functional severity' than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or hemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that CFIDS patients scored the lowest. 'In other words", said Dr Leonard Jason in a radio interview, "this disease is actually more debilitating than just about any other medical problem in the world.'"

ME has been recognized as a serious neurological illness in the medical literature since 1938, but was "rediscovered" in the United States in the early 80's. Originally renamed Chronic Mononucleosis or Chronic Epstein Barr Virus (CEBV), the name was changed to the belittling misnomer Chronic Fatigue Syndrome (which patients renamed CFIDS to reflect immunological abnormalities). Because of the panapoly of symptoms and the reductive nature of the name, patients have lobbied for years to rename CFIDS. Most patients prefer a version of Myalgic Encephalomyelitis, or ME. Now that CFIDS has been linked to an HIV-like retrovirus called XMRV, many patients are calling the illness XAND (for XMRV-associated neuroimmune disorder) or simply X Disease. The link to XMRV has led the Red Cross to ban blood donations from patients with CFIDS, and encouraged many patients to try antiretroviral medications typically used for AIDS. CFIDS is not the same as "chronic fatigue," an offensive shorthand used by practitioners which has nothing to do with the complex illness of CFIDS. Up to 25% of the population suffer from idiopathic chronic fatigue, but these individuals rarely have CFIDS, and practitioners who pretend otherwise tend to do great damage to patients. Lumping CFIDS patients with "chronic fatigue" patients is like lumping together skin cancer and eczema. CFIDS has nothing to do with the word "fatigue," though one of its hallmark traits is extreme, widespread symptomatic payback from any form of exertion - mental, physical, sensory, or postural. Simple daily acts such as talking on the phone, listening to music, eating, being around other people, even sitting up briefly can be so damaging to CFIDS patients that they spend most of their time recovering and suffering horrendous symptoms from simply trying to get through daily life. Sometimes adrenaline surges can allow patients to temporarily appear more able-bodied than they are, but the crash from such efforts can last for weeks, months, or years and can often be devastating (and sometimes fatal). Payback from exertion is often delayed 24-48 hours, making it harder for patients to pace themselves.

SPECT scans, MRI, and Magnetic Resonance Spectroscopy testing all demonstrate dramatic and severe malfunction of the brain in CFIDS patients (whose SPECT scans most closely resemble those of patients with AIDS dementia). Other compelling research focuses on links between CFIDS and diastolic heart failure, or left ventricular dysfunction. Dr. Paul Cheney and the ME Society of America have written hypotheses on the subject. There are no approved drugs for the treatment of CFIDS, and research hinges on greater public awareness of this crippling epidemic. Most people with Gulf War Syndrome are believed to have CFIDS, and many CFIDS patients also have Fibromyalgia and/or Multiple Chemical Sensitivities. Read more about CFIDS in this PDF excerpt from Stricken.
About MCS

Multiple Chemical Sensitivities, also known as Environmental Illness or Chemical Injury or simply chemical sensitivity, sometimes overlaps with CFIDS and causes individuals to become neurologically sensitized to chemicals in the environment, including fragrances, car exhaust, pesticides, cleaning products, and building materials. People with MCS have extreme and often progressive neurological reactions to these exposures, sometimes leading to anaphylaxis and death, and those with severe cases must live life in a virtual bubble, exiled from modern society. People with MCS are up to one thousand times more sensitive to chemicals than the average person, which means that ingredients in most common products can be extremely detrimental or deadly. Even the tiniest exposure, such as standing on a street corner next to a person whose clothes were washed in conventional detergent, can cause severe damage to someone with MCS.

The Environmental Health Coalition of Western Massachusetts found in a survey that 57% of people with MCS had been homeless at some point in their illness. People with MCS face extreme levels of discrimination when they ask for disability accommodation. Few accommodations are made for MCS patients in hospitals, in long-term care facilities, low-income housing, and homeless shelters. Ironically, many individuals with MCS cannot enter facilities designed for health care. Many veterans of the first Gulf War have CFIDS and/or MCS, most likely resulting from chemical exposures. Some of the greatest dangers for people with MCS are fragrances in personal care products and fabric softener. This is why MCS advocates fight for "safe spaces" and "fragrance free" events, so that they might occasionally attend normal functions. Akin to building ramps for the visibly disabled, creating safe spaces and using natural, fragrance free products are simply the ethical things to do.

Mouse demonstrating the effects of neurotoxicity after mild exposure to new synthetic carpeting (Anderson Labs).
"The worst cases have both an MS-like and an AIDS-like clinical appearance. Most have abnormal neurological examination. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self" - Dr. Paul Cheney: Testimony Before the FDA Scientific Advisory Committee, 2/18/93