THE MYSTERIOUS SKIN DISEASE THAT IS OR ISN’T REAL



Do you have a mysterious condition? Has your health care professional, unable to diagnose it, told you your symptoms may be psychological?

Scientists and US government once said the following diseases were imaginary:

  • Agent Orange Syndrome. Between 1965 and 1970, the U.S. Air Force sprayed more than 40 million pounds of Agent Orange over 5 million acres of forest in Vietnam and Cambodia. The herbicide– 50/50 mixture of two herbicides, 2, 4-D and 2, 4, 5-T which formed the highly toxic compound dioxin—was later found to cause birth defects and such serious illnesses as cancer, adult-onset diabetes, liver failure, and chlor-acne.
  • Gulf War Syndrome.  A wide spectrum of illnesses and symptoms ranging from asthma to sexual dysfunction were reported by U.S. and U.S. allied soldiers who served in the Persian Gulf War in 1990–1991. There is still much debate over the origin and nature of Gulf War syndrome. The US Department of Defense has failed to establish a definite cause for the disorder. Veterans who have the illness experience a wide range of debilitating symptoms that elude a single diagnosis. Common symptoms include fatigue, trouble breathing, headaches, disturbed sleep, memory loss, and lack of concentration. Similar experiences among Gulf War veterans have been reported in the United Kingdom and Canada.
  • Chronic Fatigue Syndrome. A debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. A variety of studies by CDC and others have shown that between 1 and 4 million Americans suffer from Chronic Fatigue Syndrome (CFS). They are seriously impaired, at least a quarter are unemployed or on disability because of CFS. The CDC says on it website: “The cause or causes of CFS have not been identified and no specific diagnostic tests are available.”

  • Fibromyalgia an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. There are no blood tests or X-ray tests that help the doctor determine whether someone has fibromyalgia. These tests are done to exclude other possible diagnoses. Therefore, the diagnosis of fibromyalgia is made purely on clinical grounds based on the doctor’s history and physical examination.
  • 9/11 First Responders’ Illness. Doctors treating sickened ground zero workers offered Congress a detailed diagnosis six years after the destruction of the Trade Centers of the ailments affecting thousands but warned that there’s no way to determine how many more workers may become afflicted with life-threatening illnesses.  The First Responders’ ailments range from runny noses to laryngitis to lung disease. Scores have died, many from of a type of lung cancer.

I found the US Food and Drug Administration disbelieving parents who noticed sugar and artificial coloring agitated their children when I researched my books, A Consumer’s Dictionary of Food Additives and A Consumer’s Dictionary of Cosmetic Ingredients (Three Rivers Press). In 1982, a Consensus Development Panel of the US National Institutes of Health (NIH) concluded there was no scientific evidence to support the claim that additives or colorings cause hyperactivity. The British Food Standards Agency, however, disagrees and in 2007 revised its advice about certain artificial yellow and red colorings because the additives apparently cause hyperactivity in children.

When I wrote in A Consumer’s Dictionary of Household, Yard and Office Chemicals (ASJA Press), the idea that pesticides could cause farmers to be susceptible to the “shaking disease”, Parkinson’s, again government agencies were being skeptical. In April 2009, University of California researchers reported they found that residents who lived within 500 meters of fields sprayed with pesticides between 1974 and 1999 had a 75-percent increased risk for Parkinson’s.

In addition, people who were diagnosed with Parkinson’s at age 60 or younger were found to have been at much higher risk because they had been exposed to the pesticides maneb or paraquat between 1974 and 1989—years when they would have been children, teens or young adults.

The patients who complained about the symptoms of these “non-diseases” were finally vindicated when researchers eventually discovered evidence of an organic basis for their complaints. Now another condition is being attributed to imagination or suggestibility—Morgellon’s Disease.

Mary Leitao, a Pennsylvania doctor’s wife, observed in 2001 her two-year-old son had developed sores under his lip. He began to complain of “bugs” bothering his skin. Leitao, who graduated with a BS in Biology, and worked for five years at Boston hospitals as a lab technician, visited eight different doctors who were unable to find any disease, allergy, or rare disorder about her son’s described symptoms. She was finally told she, herself, had a psychological problem.

Determined to find the answer, she established The Morgellons Research Foundation (MRF) in 2004 to raise awareness and funding for scientific research concerning the poorly understood condition which she claimed can be disfiguring and disabling. Leitao chose the name Morgellons from a description of an illness in the monograph A Letter to a Friend by Sir Thomas Browne in 1690. The doctor’s wife had hoped to receive information from researchers or physicians who might understand Morgellons. Instead thousands of others contacted her describing their mysterious skin ailments accompanied by neurological symptoms—fatigue, muscle and joint pain, and other manifestations.

The Morgellons Research Foundation and self-diagnosed Morgellons patients successfully lobbied members of Congress and the U.S. government’s Centers for Disease Control and Prevention (CDC) to investigate the proposed condition.

The CDC just recently set up a research program at Kaiser Permanente in California, US, to try to find an answer to whether “Morgellons” is a true disease. Persons who suffer from this condition, the CDC says, report a range of skin complaints including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin rashes or sores. In addition to skin symptoms, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. The CDC admits “At this time, scientists and doctors do not know what causes this condition.”

The CDC is a public health institution that is a part of the US federal government but does not provide healthcare or maintain a referral list of providers. CDC maintains a telephone number with a pre-recorded voicemail and an email account to which you can send inquiries. The agency is not able to provide individual responses to each inquiry. To learn more about the investigation, please refer to the following link: www.cdc.gov/unexplaineddermopathy/investigation.html. Email: morgellonssyndrome@cdc.gov or Phone: 404-718-1199 (Pre-recorded message with voicemail).http://www.cdc.gov/unexplaineddermopathy/

Right now, the US government is somewhat skeptical about Morgellons. As occurred with the conditions mentioned at the beginning of this article, the symptoms Leitao describes were first ascribed to psychological problems. Will the controversial Morgellon’s Disease also turn out to be a real syndrome when the cause or causes may be discovered or will it turn out, after all, just a figment of thousands of people’s imaginations?

Stay tuned!

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