CFS - Front End of Chemical Sensitivity

CFS - Front End of Chemical Sensitivity

By Janet Dauble (All bolding done by Janet)

In the book A Clinician's Guide to Controversial Illnesses, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities, Renee Taylor, Fred Friedberg and Dr. Leonard Jason make the statement that "Multiple Chemical Sensitivities can best be differentiated from CFS and FMS due to the reactive nature of the illness upon exposure to relatively low levels of chemicals and other irritants, and the resolution of symptoms upon withdrawal from the chemicals or irritants." This seems obvious. However, as regards the thousands of people suffering from CFS and FM, this is not fully true. The true difference is that people with CFS and Fibromyalgia are reacting without knowing it (even beyond allergies they may know about). Thus, there is no difference between CFS, FMS and MCS except revealed truth.

The truth that CFS for the most part is an unknown, not obvious, chronic reactive state of food, chemical, etc. sensitivity:

is hidden.

is hidden because surveys of the overlap of CFS, FM and MCS are defective.

may not be known.

may be noticed by patients but not be fully understood.

may be noticed by specialists but not be fully understood.

may not be believed.

may be hard to grasp.

is not the truth wanted.

may be known but not told.

may help patients but hurt funding.

discovered and applied helps alleviate symptoms.

explains come and go disability for some.

is hard to explain.

The Truth can be Hidden

People experiencing fatigue/weakness, pain, bowel problems, cognitive function problems have to be tested in order to know whether they have food and chemical sensitivities or they have to avoid specific foods and chemicals for over four days and then challenge themselves. Reactions can be chronic and delayed and reactions can be masked.* This is due to the body's ability to adapt to allergens while all the time health injury is taking place. Therefore, you can consider that ongoing CFS and FM symptoms are UNKNOWN chronic reactive states. Identification and avoidance of individual food, chemical and other "irritants" would resolve CFS and FM symptoms!

The Truth is Hidden Because Surveys of the Overlap of CFS, FM and MCS are Flawed

Molly Brown and Dr. Leonard Jason published another study of the overlap of these three illnesses in May 2007. The results told of degrees of illness between the groups and overlaps of groups.

However, as Bill Meggs, M.D. states in his editorial "Gulf War Syndrome, Chronic Fatigue Syndrome, and the Multiple Chemical Sensitivity Syndrome: Stirring the Cauldron of Confusion,"** Surveys of chemical sensitivity are concerned with the back end of the process. The front end of chemical sensitivity is a patient with one or more chronic diagnosable conditions and with no acute reactivity to chemicals. [At this point, they are the same as CFS and FM patients!] Removal of the patient from the chemical environment causes resolution of the chronic condition, and it is replaced by acute reactivity to chemicals. Chronic exposures mask* the acute reactivity. A 4-stage process is observed:

(1) individuals lose their adaptation and progress from well being (stage 0) to
(2) having irritant responses to chemicals (stage 1), to
(3) having inflammatory responses (stage 2), and finally,
(4) tissue damage (stage 3).

Prior to the development of tissue damage, individuals can move between the stages as exposures wax and wane. Surveys designed to detect the prevalence of chemical sensitivity will only detect the unmasked patients and are sure to underestimate the prevalence.

To be accurate, any survey of the overlap of CFS, FM and Chemical Sensitivity must include thorough specialized testing of the participants.

The Truth May not be Known

When at a conference hosted by the CFS Institute in 1992, I asked Paul Cheney, M.D., one of the doctors treating the outbreak of illness in Incline Village, NV, about seven years prior, if toxic chemical exposure wasn't the cause of CFS. He told me that it was not because the world is cleaner than it was, even that a city in Pennsylvania was cleaner than it was 50 years ago! He also denied my question about pesticides which are everywhere causing CFS because Tahoe was pristine, having its own form of the EPA years before the Federal Government formed one. I then made two telephone calls to Lake Tahoe and quickly found out that the residential area of South Lake Tahoe had been fogged at least once a year for about ten years. A truck with men dressed in protective suits fogged with an organophosphate pesticide in the middle of the night to combat snow-melt mosquitoes. Organophosphate pesticides are recognized by the EPA to cause chronic weakness and cognitive dysfunction symptoms, which are symptoms experienced by CFS-diagnosed people. A study in the Summer 2005 issue of The CFIDS Chronicle, "Gene pattern revealed in pilot study" stated "that their results point to a role for organophosphate exposure or viral infection in CFS."

A friend of mine whose wife had been diagnosed with CFS told me that they were walking back to their cabin from a casino in Tahoe late one night and found themselves walking behind a truck fogging for mosquitoes. Unfortunately, he could not remember if that was before or after she became ill with CFS. Also, 200 employees exposed to pesticide applied inside a South Lake Tahoe casino in March 1990 became very ill. According to a April 11, 1992, Arizona Republic newspaper article, at least 24 employees developed chemical sensitivity and most could no longer work. One of our severely sensitive members became sensitive while working in a casino in that area after a pesticide application. There are golf courses in the area which probably use lawn care and pest control chemicals and pest control companies servicing business and residences. Therefore, the Lake Tahoe area is not pristine. While groups of people, such as a group of musicians, became ill with the mystery disease, contagious disease is not the only possible cause to consider from these effects. Shared environmental toxin exposure such as a new carpet or applied pesticide is experienced by families and groups as well.

The Truth May be Noticed by Patients but Not Understood

One woman told me she got her "CFS" following extermination of black widow spiders in her garage by a pest control company, another said she got her "CFS" after working in a new building, and another told me that many people in a small town said they got their "CFS" from agricultural pesticide drift. John Gow, a researcher from Glasgow, Scotland, reported at an American Association of CFS Conference that farmers in Great Britain were getting a "CFS-like" illness from exposure to Dursban (an organophosphate pesticide) in sheep dip.

I took the time to read Osler's Web, by Hillary Johnson. It is a fascinating 700-page account from a patient's point of view of the clinical and political history of the outbreak of the Yuppie Flu in the Incline Village area. One vignette was about seven out of eight teachers who shared a study/lunch room who became ill. Of course it was supposed that they caught a contagious virus due to their close contact. However this account from Osler's Web should lead us in another direction and cause us to question the other clusters as well:

Because of the crush of students that year, teachers were obliged to prepare their lessons and eat lunch in a cramped room next to the principal's office on the first floor. Compounding the teacher's discomfort that fall was a newly installed heating system, intended to save money, that recycled the warm air in individual rooms rather than drawing in fresh air and distributing it throughout the building. School administrators instructed employees in resolute terms to keep all windows closed. Reluctantly, the teachers acquiesced to their hermetic existence in the lounge, although many of them found their habitat, polluted by cigarette smoke and fumes [FUMES] from the two bulky copy machines, nearly intolerable at times....Eric Jordan was so put off by the fumes and the meanness of the accommodations that he left school during third period each day, driving his pickup truck with a camper attachment to the lake. There, savoring his view of the largest alpine lake in North America, he perked a pot of coffee and worked in the solitude of his camper....In the end, only one teacher among the eight emerged unscathed [from illness]: Eric Jordan, the outdoors man who had chosen to prepare his lessons and grade papers in the stillness of his camper. "I'll tell you," Gerald Kennedy said years afterward, his voice quavering, "it paid to get out of that room."

We also learn from Osler's Web that Dr. Carol Jessop had seen 500 CFS patients by 1988. She noted then that they reacted to medications and one half of them developed allergies to a variety of animals, foods, and chemicals within a year's time. Many of our members experienced initial extreme fatigue and mononucleosis which either later developed into MCS or which was then recognized to be fatigue caused by MCS. (Ask Share, Care and Prayer for copies of the papers "The Coincidence of Allergic Disease, Unexplained Fatigue, and Lymphadenopathy: Possible Diagnostic Confusion with Infectious Mononucleosis" and "Fatigue and Weakness of Allergic Origin (Allergic Toxemia) to be Differentiated from 'Nervous Fatigue' or Neurasthenia" by Theron Randolph, M.D.)

One of our long time Share, Care and Prayer members told me some time ago that she had initially gotten sick in the late 1970's while at college. She saw Dr. Jessop and believed herself to be a bonafide CFS (fatigue caused by virus) patient with some sensitivities following a bout with a bad flu and mono. She then had to leave her apartment for a few days because of some painting. Although she had not camped out since she had become sick, she decided to try. After leaving her apartment and the polluted city air behind, she found that her fatigue totally vanished and she was able to hike again. This brought back memories of a bike trip she had taken just before she became so ill. Her group of friends had been trying to ride over a mountain crest before nightfall, but it got too dark to continue. The group bedded down in an empty field. In the morning, the group discovered a warning sign that the land had been sprayed with pesticide. She now recognizes that she is a bona fide chemically injured and sensitive patient who experiences extreme fatigue, etc. when exposed to her allergens!

Besides becoming ill following chemical exposure many "CFS"-diagnosed people feel better avoiding chemicals but do not fully comprehend the significance. Several years ago The CFIDS Chronicle ran an article about a fellow who was healed of "CFS." However, he was only healed if he stayed in a mountain cabin in clean air and dieted. Another article told of a woman with "CFS" who on a good day stained her deck. This set her back presumably due to the physical labor, but what about the chemical exposure? And patients often talk about a trip to the mall causing a "flare-up" of their flu symptoms without consideration of the high amount of chemical exposure from fragranced products and chemicals in clothing, etc. in the mall. Subsequent exposure to chemicals can also exacerbate virus activity. One woman diagnosed with Epstein Barr Virus had much higher EBV titers after purposely exposing herself to construction materials which she had used at work before she had to quit due to illness.

The Truth May be Noticed by CFS Specialists but Not Fully Understood

Some prominent CFS physicians at least recognize that environmental factors are causing symptoms. At the 1996 San Francisco AACFS Conference, Dr. David Bell acknowledged that many of his young patients complain of odors bothering them. Long time, prominent CFS researcher Dr. Jay Levy, in a T.V. interview about the conference, stated that CFS patients are bothered by perfume, pesticide and car exhaust. He stated that they get so sick that many things bother them. But, when they get better, they are no longer affected by those exposures.

At another CFS conference, Dr. Paul Cheney defined CFS as including the symptoms of "medication and environmental sensitivities" and his web site stated that the cellular detox failure from glutathione deficiency "can make these [CFS] patients canaries to their environment." Chemically sensitive people have long used the canary-in-the-mine allegory to describe themselves. Dr. Jay Goldstein, director of the CFS Institute, in an interview for the Anchorage Press, stated that CFIDS is a neurosomatic disorder and that, as a result, brain chemistry can cause touch to be painful and odors to aggravate illness.

Let me share a few more important observations. Dr. James Jones of the National Jewish Hospital has long reported that a high percentage of CFS patients have allergies (conventional allergies--probably pollen, cat dander, and food allergies causing rash, stomachache, headache, and anaphylactic shock). The new Chronic Fatigue Syndrome Information Booklet for Physicians published by the National Institute of Allergy and Infectious Diseases, National Institutes of Health, states: "Some studies have found a significantly greater prevalence of allergy in CFS patients than in the general population. Many CFS patients have a history of allergies years before the onset of the syndrome. Sometimes patients report a worsening of allergic symptoms or the onset of new allergies after becoming ill with CFS. Because allergies are so common in people with CFS, it is important to differentiate those symptoms that are allergy-related and thus amenable to specific therapies."

One more example from that conference: Charles Lapp, M.D., then V.P. of the AACFS, in his presentation on a proposed case definition for CFS, included the consideration of adding to the symptom list: "Sensitivities to chemicals, odors, fumes, smoke, new or out of the ordinary." Here we have a public attempt to define Multiple Chemical Sensitivity as a subset of CFS. It should be the other way around.

To my knowledge, none of the physicians specializing in CFS ever recommend their patients be tested for sensitivities or even to avoid chemical exposure to prevent symptoms and prevent greater disability in the future.

The Truth May Not be Believed or Ignored

At the 1996 American Association of CFS (AACFS) Conference held in San Francisco Dr. Timothy Roberts, a researcher from Australia, presented four studies which reported that higher concentrations of organochlorine pesticides were found in some CFS patients than in healthy individuals. The abstract from one study stated: There are no significant differences in serum organochlorine concentrations between CFS patients and chronic fatigue patients with a history of toxic chemical exposure. Therefore, exclusion of patients from the CDC research definition of CFS on the basis of a reported history of known exposure to toxic chemicals is not valid.

I was delighted to read in the Vol 2(4) 1996 Journal of Chronic Fatigue Syndrome about a research study which showed a high correlation between CFS and pesticide exposure. The study was done by the CDC. (See below.) I called researcher Dr. Reyes to discuss this finding and recommended that they continue to use pesticide exposure in subsequent epidemiological studies. As far as I know, however, that was not done.

I made it a point to tell AACFS President Dr. Sudhir Gupta at the 2000 AACFS Conference about the EPA discovery that organophosphate pesticides, the most commonly used residential pesticides, were found to cause all the symptoms of CFS. His response was something like this: "That may be true, but do they cause [THE] Chronic Fatigue Syndrome? It will have to be researched." However, I have seen no such research since our conversation.

The Truth is Hard to Grasp

The truth, here, is stranger than fiction. Environmental allergy/sensitivity, unlike conventional allergy, can cause individualized reactions. One person can eat wheat, for instance, and have fatigue. Another can eat wheat and have pain. A third can eat wheat and have cognitive function problems. Another can eat wheat and have a combination of these symptoms and/or a myriad of other symptoms.

One person can breathe perfume and have any one of the above-named symptoms, or a combination! Add to that, that any food or chemical could cause similar symptoms and more symptoms, and reactions can be delayed up to three weeks. It is, therefore, apparent why it is so hard for patients to connect cause and effect and why individual testing is so important.

The Truth is Not the Truth Wanted

In 1992 and 1993 Dr. Jay Goldstein included several Environmental Medicine Physicians in the program at his three CFS Institute Conferences. I was especially hopeful that the truth would be accepted to help people with CFS when, at the end of Dr. Claudia Miller's presentation, she asked the CFS patients in the audience to raise a hand. It appeared to me that about 40 people responded. Then she asked how many of them realized that they were sensitive to things like perfume, cigarette smoke and car exhaust. Just about all responded again. As I reported later in a newsletter, I thought this was "Quite an eye opener for the virus/CFS-oriented doctors present." Dr. Cheney was present.

Dr. Cheney adamantly told me at a 1994 American Academy of Environmental Medicine Conference that although he added the need to avoid food allergies in his treatment protocol he did not want to have his patients tested because he did not want them to think their illness was food allergy. I responded by telling him that without food allergy testing I would still be home in bed and not at the conference. (I would not have known, nor believed, that my symptoms of CFS, FM, etc. were caused by food sensitivity without being tested.) Many years later, Dr. Chaney advocates elimination diets for CFS patients.

Some people diagnosed with CFS who know about food and chemical sensitivity are afraid of investigating whether they have it. It would be so much easier to find a viral cause and a successful drug treatment than to consider changing diet and lifestyle in order to feel better. And, PWC (people with CFS) do not identify with those chemically sensitive people they have heard of or knew who must live in a trailer in a remote area and wear a mask when in public. However, this description of an Environmentally Ill person relates to only a very small percentage of those who are chemically sensitive. Others believed that there is an even greater stigma attached to the diagnosis of MCS than CFS. And there are others who refuse to consider a change in diet or lifestyle no matter how sick they are for a variety of reasons. For example, one very fatigued patient told me at a conference that she would never give up eating sugar.

Every once in a while I will also hear from someone correctly diagnosed with Environmental Illness tell me that they now have CFS or FM since their prior individual combination of symptoms didn't include fatigue or pain. Just like people diagnosed with CFS and FM, they fall for the belief that CFS. FM and MCS are distinct diseases and they want to know what to do to get better. These people need to regroup, see if they have been lax in their diet and lifestyle, determine if a new medication or supplement they are taking is causing the new symptoms, and/or get more testing to find out if they have developed new allergens. Something that they are doing is causing the fatigue or pain.

The Truth May be Known but not Told

At the 1996 AACFS Conference I thanked Dr. Leonard Jason for his very helpful treatment survey on MCS and CFS patients in 1995. Then I proceeded to tell him how important food allergy was in CFS patient treatment. Dr. Jason responded by telling me that food allergy diets are the first place to start to get better. However, I have not heard him say this in his conference presentations. Nor did I find any such advice in his book, A Clinician's Guide to Controversial Illnesses, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities published in 2001 which included a chapter on treatment for these syndromes. Patients and CFS specialists would never know he believed that food allergy testing and avoidance could help someone get better by reading his books.

At the end of a 2002 CFS/FM conference held in Los Angeles, I asked one of the speakers during the Q & A session if he used food allergy testing on his patients. He said "Yes." But he and the other physician I know very well, who also spoke, did not mention food allergy treatment in their presentations. The patients who paid to hear how they could get better were not told.

The Truth May Hurt Funding

At the AACFS Conference held in Boston in October of 1998, a researcher reporting on the major drug treatments tested by patients to overcome CFS over the years, stated that the most effective medications were the tricyclic antidepressants. When I asked him from an audience microphone if he thought that the tricyclic drugs helped with CFS because they contained antihistamine properties and they helped with allergic reactions, he let out a nervous laugh and didn't answer me. Later, I discussed food sensitivity as a cause of the cognitive dysfunction symptoms of CFS with another researcher after his panel presentation. He said he knew that food sensitivity caused CFS symptoms but he could not include that in his presentations or the government would not pay attention to his research proving CFS was not psychological!

Symptoms of CFS, FM, and MCS are the Same

The short version of the symptoms listed for CFS by the CFIDS Association of America: It is a complex illness characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), pain, neurological problems and many other symptoms.

Symptoms listed for FM from a National Fibromyalgia Association brochure: PAIN - The pain of FM is profound, widespread and chronic. It knows no boundaries, affecting any or all parts of the body with varying intensity. FM pain has been described as deep muscular aching that can throb, stab, tingle or burn. A variety of factors such as weather, stress, and activity level can affect the nature and severity of the pain. FATIGUE - The fatigue of FM is an all-encompassing exhaustion that interferes with even the simplest daily activities. It can feel like every drop of energy has been drained from the body, leaving the patient with a limited ability to function both mentally and physically. SLEEP PROBLEMS - Research has documented distinct abnormalities that frequently occur in the deepest levels of sleep in FM patients. The result is non-restorative sleep. OTHER SYMPTOMS - People with FM often report "brain fog," characterized by problems with cognitive functioning, memory and concentration. Other common complaints include irritable bowel; headaches and migraines; chemical or environmental sensitivities; restless legs; and neurological symptoms such as dizziness, vision problems, numbness, noise sensitivity, or impaired coordination.

See Allergy/Sensitivity Symptoms on this web site for the list of symptoms caused by food and chemical sensitivities and see Founder for my (Janet's) story.

The study "Immune Activation and Autoantibodies in Humans with Long-Term Inhalation Exposure to Formaldehyde" by Jack Thrasher, Ph.D. and Alan Broughton, M.D., found that office workers, mobile home residents and workers exposed to formaldehyde: ...had sought continuous medical attention because of multiple organ symptoms involving the central nervous system (CNS) (headache, memory loss, difficulty with completing tasks, dizziness), upper- and lower-respiratory symptoms, skeletal-muscle complaints, and gastroenteritis. Three common symptoms were expressed: (1) an initial flu-like illness from which they had not fully recovered, (2) chronic fatigue, and (3) an olfactory sensitivity to ambient conditions containing low concentrations of chemicals. This describes CFS and FM patients who have graduated to being obvious sensitive.

The Truth Discovered and Applied Helps Patients

According to a 2000 issue of HEALTHwatch, Dr. Cheney recognized that chemical detoxification is needed for some CFS patients because "some of these people are loaded with all kinds of pesticides." He reportedly said during a presentation "The more I get into the issue of diet and food sensitivities, it's obvious to me that the single most common antigen to which we are exposed is food proteins. Elimination diets, and improving digestion and gut epithelial function can pay huge dividends....I've seen people in 30 days have huge clinical responses simply by this very simplest of moves." On his web site, Dr. Cheney cited a German study which found that 88% of those CFS patients studied had Type IV food hypersensitivity. And, one of the staples of his treatment program for sleep problems is Doxepin Elixir which he suspects is "the most powerful antihistamine known to man and gets into the nervous system." Of course, it is also treating allergy symptoms.

See Food Intolerance Exists as a Co-morbidity in Chronic Fatigue Syndrome in another part of this web site section for one study which did focus on the right aim.

A dramatic food-related CFS breakthrough, was reported on in the Spring 2002 issue of The National Forum newsletter. Nancy Kaiser was diagnosed as having the neurological form of celiac disease. Her history should make people with CFS and FM sit up and listen. Here are excerpts from the article "Uncharted Waters" used by permission of The National CFIDS Foundation, Inc.

For those who don't know my history--let me do a brief review. I was sort of the folklore "poster girl" for being as sick as you can get and survive with CFIDS in those early years. I started with symptoms in the early 1970s and by 1981 was a total disaster. I tried everything: interferon, trigger point injections, nerve blocks, acyclovir, a spinal cord stimulator for pain, exploratory surgeries, lumbar punctures, gamma globulin, first PWC [person with CFS] on Ampligen, glutathione shots, antibiotic therapy, every oral herpes medicine that became available, Chiari surgery [removal of bones at base of neck to relieve pressure on spinal cord] and transfer factor. That is only a partial list--as you name it, I tried it! A few of the above therapies helped slightly but none for long. The book Osler's Web by Hillary Johnson covers a good deal of my early struggles as well as the saga of many CFIDS pioneers and our government's inability to deal with this mysterious illness.

Kaiser's Neurological celiac disease was diagnosed at Mayo Clinic and later verified by a specialist. Now for the "fun part." The only treatment for celiac disease is a gluten free diet. Gluten is found in wheat, rye, oats and barley--and unfortunately many foods contain gluten or gluten is used in their processing. Many times it is hidden and the food industry in general does a terrible job informing the public. The ingredients list you check on food labels can be very unclear or they "weasel word" to cover up, using names you would never suspect being connected with gluten. It becomes almost a science with a very steep learning curve to outfox the gluten "monster." Just cutting down on wheat won't work--it has to be zero tolerance. I have been on a gluten-free diet for 9 months. Am I cured? NO. Am I much better? YES. Dr. Dahl says it takes about 2 years to really notice an improvement. With neurologic celiac disease no one is quite sure how much of the damage which has been done to the central nervous system will be resolved. All I can tell you is my quality of life has greatly improved, thus I wanted to share this information with all PWME/Cs.

It's time that all chronically ill patients be tested for food, mold and chemical sensitivities. It's time that all people diagnosed with CFS and FM be taught simple chemical avoidance principles such as to eat organic food, and to avoid all perfumed products which contain tens to hundreds more chemicals, chemical commercial cleaners (use vinegar, Bon Ami, and borax), and synthetic clothing/bedding (use cotton, wool) , and switch from natural gas use for cooking and heating to all electric. Time spent outdoors in clean air, walking, sleeping at night, can make a great deal of difference in the reduction of fatigue and pain.

The Truth Not Recognized and Applied can Cause More Health Degeneration

I received a telephone call from a mother of an extremely chemically sensitive man. He had been diagnosed many years earlier with CFS. His illness and suffering progressed until he was living a nightmare. He had become extremely chemically sensitive and noise sensitive, and totally dependent on her. She was delighted to have found out about our organization because we understood that the symptoms of CFS were caused by UNKNOWN sensitivity. She was frustrated that no one in the CFS network had warned them over the years about avoiding common chemical exposures because she felt her son's health would not have degenerated so badly if they had been told. I remember her lament: "No one told us about avoiding exposures."

One woman who had been diagnosed with CFS for 13 years used a lot of bleach cleaning her bathroom because she was afraid that germs would aggravate her CFS. She subsequently became exquisitely chemically sensitive, so much so that she had a difficult time finding any water or writing paper that she could tolerate. And she experienced anaphylactic shock upon exposures to cigarette smoke and latex. These extreme cases of chemical sensitivity in long-time CFS-diagnosed patients could have been avoided had they known the truth about their illness and applied the principles for alleviating symptoms of MCS.

The Truth Explains Come and Go Symptoms (Moving Between Stages)

Olympic speed-skater Amy Peterson, another "poster girl" for CFS, was a key-note speaker for the September 2002 Latest 21st Century Medical Advances in the Diagnosis & Treatment of FM, CFS & Related Illnesses Conference in Los Angeles. Amy, winner of a silver metal and two bronze metals from participating in three Olympics, explained how exhaustion and headaches had caused her not to be able to qualify for the 1995-96 World Championships. This prohibited her from participating in the 1998 Olympics.

After being diagnosed with CFS she quit her part time job and school, and moved to New York to concentrate on skating. She was able to make the 2002 Olympic team that went to Salt Lake City. Although she did not win any medals, she was given the great honor of helping to carry the American flag during the Olympic Opening Ceremonies.

Amy's talk was very interesting and motivational. I am sure the CFS/FM patients in the audience could identify with her. She described her symptoms, which included being cold, having severe headaches, memory dysfunction, and muscular pain. Her illness caused her to struggle with her identity. And, even though she had a close knit and helpful family, she had her share of people not understanding the severity of her symptoms -- probably because she had times when she could skate and compete.

During the Q and A session, I asked her if she had been exposed to any chemicals such as pesticide before she became ill. Her response: "You are the first person who has ever asked me that question." I view this as a tragedy considering the number of conventional doctors she had seen, the years she has been involved in the CFS network and the lack of guidance she received from an Environmental Medicine standpoint. She couldn't think of any particular precipitating exposure at the moment, but said that "skating rinks can be toxic." I agreed that they can be toxic because of mold and the Zamboni machines producing lots of exhaust which can be held in the cold air along with cleaning products such as Pine Sol.

The next morning I was able to chat with Amy for a few minutes. She immediately told me that she remembered that when she had been employed at a plant nursery she would breathe the pesticides which were located on shelving near where she worked. Bingo! I then responded: "How do you feel about perfume?" She quickly responded: "I hate perfume!" I then asked how she did around cigarette smoke. She said that if she gets around too much of it, it causes her a headache. That she had MCS was never mentioned in news articles about her and she probably never knew that her sensitivity to perfume was caused by exposure to pesticide. Or, that avoiding perfume was relevant to achieving better health. Could things have been different for her if she had been diagnosed with Environmental Illness and treated before the 1995-96 World Championships? I recommended that she take the blood tests for food and chemical sensitivity and added her to our mailing list.

The Truth is Hard to Explain

I have been trying to explain to people with severe fatigue and pain, bowel problems, Restless Leg Syndrome and many other types of named syndromes that they need to be tested to find out if food and chemical sensitivity is at the bottom of their symptoms. I can see in their faces that they miss the message. After all, they believe that allergies are just hay fever, rash, hives and anaphylactic shock. And, CFS and FM are CFS and FM. I hope that the people reading this article and perusing this web site will "GET IT." And that the truth acted upon will turn your suffering around. If you get it and get better, let me know and spread the news.

Again, please see "Food Intolerance Exists as a Co-morbidity in Chronic Fatigue Syndrome" in another part of this web site section for one study which did focus on the right aim. And, which had a great outcome.

*As per Claudia Miller, M.D., "Masking: multiple, overlapping symptoms triggered by everyday exposures. Masking hides the relationship between symptoms and specific triggers, making it difficult for patients and their physicians to diagnose Multiple Chemical Intolerances."

** "Gulf War Syndrome, Chronic Fatigue Syndrome, and the Multiple Chemical Sensitivity Syndrome: Stirring the Cauldron of Confusion," by Wm. Meggs, M.D., Archives of Environmental Health, September/October 1999 (Vol. 54, No. 5).