EMS is a disease which is:

A novel (new) disease: first recognized in 1989 during what is often called "The EMS Epidemic."

Usually Chronic and without a treatment protocol that works for all; treatment is by symptoms as they occur.

Multi-systemic: capable of affecting two or more body systems; for example: skin, muscles, heart, etc.

Autoimmune in nature: EMS, by mechanisms not entirely understood, affects the immune systems of patients.

Rare: Probably no more than 5,000 - 10,000 persons got it, many of whom may never have realized they were sick with EMS and might have been misdiagnosed or undiagnosed to this day; at least 1,500 to 2,000 persons were more severely damaged or affected by EMS and many of those continue to suffer with chronic EMS problems.

Characterized in the acute phase (usually) by an elevated eosinophil count - called Eosinophilia and by Myalgia, which is muscle pain. Myalgia generally continues in the chronic phase of the disease, though eosinophilia almost always returns to a normal count by the chronic phase. Therefore, physicians today who believe that their patients MUST have an elevated eosinophil count to still have EMS are wrong, showing their ignorance of the course of the disease. Eosinophilia usually resolved in the first year or two of EMS. Occasionally, patients have a return of eosinophilia, and a few always run an elevated count. The majority of EMS patients do not continue to have an elevated eosinophil count after the acute phase. More on eosinophilia

Associated with usage of impure L-tryptophan: L-tryptophan, an amino acid supplement available over the counter until withdrawn by the FDA in early 1990, was used by the overwhelming majority of persons who got EMS during The EMS Epidemic of 1989 through early 1990. Most cases occurred in the summer and fall months of 1989 and were later found to be connected to usage of tainted L-trp (L-tryptophan) manufactured by Showa Denko K.K., a large petrochemical company in Japan. Apparently, the L-trp became contaminated in the manufacturing process of the raw bulk product, which was then shipped to America (mainly) and some other countries to be put into pills and sold to health-conscious consumers.

The product was promoted at the time as a remedy for complaints such as PMS, chronic pain, migraines, and insomnia amid claims that it was "natural and pure" on the bottles, in pamphlets, in books, etc., of the time. The public believed this to be true and had no idea that the raw product was manufactured outside the USA, since this fact was not required to be included on the bottle labels. Of course, nothing that is in pill form can be truly *natural* - think about it. And, even foods occurring outside in a natural setting may be poisonous - such as poisonous berries that might cause sickness or death if picked and eaten.

What happened, so we have been told, was that Showa Denko had altered its manufacturing process in 1988 to include genetically-engineered bacteria instead of a previously employed naturally-occurring bacterium to make L-tryptophan (a fermentation process was used requiring a bacterium). Furthermore, SDKK had cut back purification at the same time. Scientists do not agree as to which action caused the impurities associated with EMS - whether one or both. Personally, I believe the GE change was the critical causal factor.

Associated sometimes with usage of other supplements which can cause EMS or an EMS-like syndrome: Some of these supplements have included 5-HTP (5-hydroxy-tryptophan), L-lysine, and Niacin. Whether or not over-the-counter supplements are today causing EMS or an EMS-like syndrome seems to be up in the air, though I personally have corresponded with several scores of persons since 1995 who believe they have been sickened with an EMS-like illness or with EMS by using various supplements. Some of these persons got completely well once they stopped the particular supplement they were ingesting, but others have not. I've seen no conclusive studies or evidence, though warnings have been issued from time to time by places such as the Mayo Clinic, Rochester, regarding 5-HTP random sampling for impurities, warning that the random sampling found slight impurities in certain products similar to those found in the L-tryptophan that caused EMS.

Therefore, I prefer to call EMS which people got in the 1980s or early 1990s from ingesting impure L-trp either "Classic EMS" or LT/EMS to distinguish that illness from other possible EMS-like illnesses that may have occurred later from using other supplements. This is purely my own preference in order to make a distinction. If someone has been diagnosed with EMS from using 5-HTP (in 1996, for instance), you can be distinguished for purposes of study from those who got EMS in 1988 or 1989 or earlier from using L-trp.

By doing this, I admit I have a preferential interest in LT/EMS, which is the disease which I have. I am not sure whether other EMS or EMS-like illnesses diagnosed from other substances since LT/EMS are exactly like LT/EMS because there are no studies or publications on the issue. Indeed, you won't hear it admitted that such cases of later EMS have occurred by most doctors or researchers; however, I do believe they have happened. Certainly, I do welcome all those who believe they have EMS or an EMS-like disease, caused by any other drug or supplement, to participate in the support groups and activities listed on my Support Page. We can all learn from one another regardless of how or when we got EMS, or whether researchers believe it's EMS. I do reserve the right to limit most of my polls to just those persons known by me to have LT/EMS or who make credible claims to have LT/EMS.

UPDATE June 2006: There is a case in California involving a "young woman" diagnosed with EMS from usage of 5-HTP. The case is set to go to trial in September of 2006. Going backwards, there was a case in Ohio several years ago of a woman diagnosed with EMS from usage of 5-HTP, but I have never heard whether it proceeded to trial or settled before trial - or what. In addition, I have heard from people making claims of having EMS diagnoses from using prescribed or over-the-counter L-tryptophan (not clear to me which) - I have heard from at least two persons in the past year making this claim. I've also heard from one person saying she was diagnosed with EMS from using the antibiotic Cipro.

Mysterious: The cause, even after all these years, is not clearly understood or defined. Perhaps as many as 60 contaminants were present in the impure L-trp; however, the end product was still over 99% pure. Efforts to reproduce the disease in animals have been disappointing, so there really isn't a working animal model of EMS. Research has focused on 6 or so of the most likely culprit contaminants as possible causes. It's likely, however, that EMS was caused by more than one factor working simultaneously, which is why it might be hard or impossible to completely reproduce it in animals. Perhaps, some persons were more vulnerable to getting the illness due to the type of immune systems they had or various genetic factors, or because of their age, gender, or overall physical condition at the time exposed.

Associated with about 100 Pre-Epidemic cases: this is not generally known or acknowledged. Certainly, something in the L-trp was making some people sick prior to The EMS Epidemic. Often, early cases were misdiagnosed as Eosinophilic Fasciitis or Polymyositis. The EMS Epidemic caused some doctors to go back and take a second look at earlier cases, especially as many of those persons were still taking L-tryptophan in 1989 and got "hit" again, so to speak. Some cases, also, may have been misdiagnosed as Fibromyalgia or Chronic Fatigue Syndrome. As well, many cases may have been mild enough that no diagnosis was ever sought - such persons might have fought off the disease successfully, or they may have become well or relatively well after a while. Also, it must not be overlooked that some persons likely got extremely sick and died of EMS without the connection to L-trp ever becoming known to their doctors and families. Furthermore, I should point out that some scientists and researchers believe that SDKK was experimenting with GE'd L-tryptophan prior to 1988, maybe as early as 1983 or 1984. I think this is likely, but I have not examined what these persons have looked at. In time, perhaps we will know more about this aspect of the EMS story.

Added 2006: This web site hs information by Wm. Crist on the GE connection and pre-epidemic cases. It's long but is a great thing to take the time to read if you have the interest. Wm. Crist Research on Pre-Epidemic Cases

Known by the diagnostic code 710.5

Mostly forgotten today by the public and many doctors: In fact, many doctors mistakenly believe that EMS no longer exists, that it ended years ago, that it went away once eosinophilia resolved, that it is not chronic, or that everyone who *had* EMS now *just* has Fibromyalgia. Certainly, secondary diseases and disorders have occurred as a result of having EMS, including but not limited to: Fibromyalgia, Chronic Fatigue Syndrome, Sjogren's Syndrome, TMJ, tinnitus, Gastro-Esophageal Reflux Disease, diabetes, and a host of other conditions ranging from life-threatening heart or lung disease to chronic skin rashes. I call EMS "The Forgotten Disease" just as the Korean War is sometimes called "The Forgotten War."

Most similar to diseases such as Lupus, Scleroderma, Fibromyalgia, Multiple Sclerosis, Eosinophilic Fasciitis, and the Spanish Toxic Oil Syndrome.

Environmental or toxin-related in that EMS is caused by toxins in a product in the environment, rather than being associated, so far as we know, with viruses or similar disease-causing agents. Toxic Oil Syndrome (TOS), which occurred in Spain in 1981 due to contaminated cooking oil, is another example of a toxin-related environmental disease.

Disabling: Many persons with EMS, whether in their 20s or 40s or 70s are disabled because of the disease and are not able to work or live normal lives compared to average persons of their age. A small percentage with EMS were immediately incapacitated and left paralyzed (some of those persons died in the first years or since); others always use wheelchairs because of the extent of damage to their muscles early in EMS or because of decreased function later in the course of EMS. Some of us, such as myself, must use wheelchairs in public in order to shop, go to parks, or attend concerts. Although some patients have had good recoveries or are stable, others continue to deteriorate as time goes on. Conclusion: EMS varies a great deal from person to person in how it affects individuals, but overall, it is a disabling and debilitating disease for many of the persons sickened with it.

Painful to one degree or another in patients: Some are well, but most with EMS continue to suffer periods of pain and sickness (flares or relapses) while often receiving insufficient understanding and compassion from physicians who sometimes don't even believe that EMS is a "real disease." Patients with EMS may have pain that is excruciating from time to time, or daily in the worst cases. Others have milder or moderate amounts of pain. Many can function fairly well much of the time, but a lot of patients with EMS can't perform unassisted the basic tasks of life, such as banking, shopping, driving, walking around the block, housework, etc.

Associated with a significant mortality rate in the acute phase: this rate varies depending on the cohort. The rate seems to vary, mostly, from 2% to 6%, depending on the cohort studied in the acute phase (roughly the first 18 months to 24 months).

Known to have occurred in other countries besides the USA, including: 105 to 125 cases in Germany; 25 or more cases in France; 22 or more in Belgium, 10 cases at least in Canada; 11 reported by 1991 in the UK and an addtional 7 reported later, though not established to all be definite EMS; 4 or more in Italy; several in Israel; 2-12 in Japan, depending on the source; at least 2 cases in Australia; and one case in New Zealand. And, it's likely other countries had some cases.

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