EOSINOPHILIA-MYALGIA SYNDROME

BRIEF DESCRIPTION OF EMS

Eosinophilia-Myalgia Syndrome (EMS) is a rare, multi-systemic, and chronic autoimmune disease caused by ingestion of impure L-tryptophan, an amino acid dietary supplement sold over the counter in the 1980s until removed by the FDA after EMS occurred. Eosinophilia is an elevated level of a type of white blood cell called an eosinophil. Myalgia refers to muscle pain.

Many Americans ingested the supplement regularly or occasionally during the 1980s, often upon the advice of a physician, for medical problems including insomnia, chronic pain, and depression; however, an epidemic of a novel illness, which came to be called Eosinophilia-Myalgia Syndrome, occurred in the second half of 1989 into early 1990 (peaking in October 1989). The overwhelming majority of persons who got sick with EMS had ingested contaminated L-Tryptophan eventually traced to one large petrochemical company, Showa Denko K.K., of Japan. Bottle labeling did not indicate the raw product originated in Japan, and nobody in this country, it seems, was told that genetic engineering had been used to manufacture the L-Tryptophan. Mandatory labeling of country of origin on bottles and containers - had it been in place - might have caused many persons to think twice about taking dietary supplements like L-Tryptophan.

Although five to ten thousand Americans (and many scores in various other nations) were likely affected, approximately 2,000 Americans were seriously injured, many of whom continue to suffer with a variety of symptoms: chronic pain, cognitive dysfunction, muscle weakness and spasms, among other symptoms. Since about 1996, research has slowed to a near standstill. Fewer studies at any time involve EMS, a toxin-induced and man-caused novel disease on the verge of becoming a mere footnote in medical history: Therefore, I call EMS "The Forgotten Disease" just as the Korean War is often called "The Forgotten War."

INFORMATION: Eosinophilia-Myalgia Syndrome Reports; FAQ; Article Links

SUPPORT: Eosinophilia-Myalgia Syndrome Support Groups & Options

Major Articles on this Web site and Other Web sites of Interest Pertaining to Eosinophilia-Myalgia Syndrome (EMS):

Eosinophilia-myalgia syndrome - Descipher Health (Information about EMS on a site where anyone can contribute; I wrote everything that appears there as of 4-08.)

Yahoo! group EMS Discussion & Information Please consider joining if you are interested in a serious group for information and discussion. New members welcome! About 52 members. People with EMS, diseases similar to EMS, or some interest in EMS are welcome.

Survey of Forty EMS Patients (Part 1) - Questions & Answers 1-6 from a Survey done in October 2007. All questions were submitted by and answered by EMS patients. When printed, Part 1 of this Survey is 8 pages long. POSTED February 10, 2008.

Topics covered not counting the Introduction: 1) Age Range of Respondents 2) Have you been diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome or neither? 3) Do you have problems with invasive medical tests? Specifically, do you have a problem with taking a colonoscopy?[during or aftereffects] (4) Do you still get muscle spasms? What do you think are the causes? 5) Do you think that adequate research on EMS occurs today? 6) Have you experienced difficulties healing from surgeries since getting EMS?

Survey of Forty EMS Patients (Part 2) - Questions & Answers 7-10 from a Survey done in October 2007. All questions were submitted by and answered by EMS patients. When printed, Part 2 of this Survey is 8 pages long. POSTED Feb. 15, 2008.

Topics covered in Part 2: 1) Have you had cancer? Recurrences or new cancer types? Types of cancer; 2) Cholesterol questions (3 sections on this topic); 3) Do you have a diagnosis of osteoporosis? There is a followup question. 4) Do you have latent or recently developed health problems that you or your doctor attribute to EMS? What?

Survey of Forty EMS Patients (Part 3) - Questions 11 & 12 from a Survey done in October 2007. All questions were submitted by and answered by EMS patients. Questions 11 and 12 were OPTIONAL, but most respondents answered both or parts of both. POSTED Feb. 16, 2008.

FAQ for May/June 2008: Recently a doctor asked me what kinds of medications/treatments others with EMS are using for control of pain, since chronic pain is one of my main symptoms. I told him "everything." I added that you will find someone somewhere with EMS has tried or is using just about any medication or alternative treatment you could name. These would include narcotics, NSAIDs, pain patches, magnesium shots, magnesium pills, water therapy, physical therapy, massage therapy, over-the-counter pain medications like ibuprofen, topical rubs, ice, heat therapy, rest, exercise, osteopathic manipulation, chiropractic treatments, other types of massage/manipulation, relaxation therapies (tapes, visualization etc), muscle relaxants, sleep meds like Ambien, SSRIs, tricyclic anti-depressants, TENS, aromatherapy, prayer, positive thinking techniques, counseling/therapy, cognitive behavioral therapy, biofeedback, injections into painful trigger points, prednisone periodically and a few all the time, vitamins of all sorts, juicing, all sorts of diets, and some (don't know how many) have returned to using tryptophan, or use 5-HTP or melatonin, even. As well, many other modalities are being utilized.

FAQ for March/April 2008: What are some of the more unusual diagnoses or problems that some people with EMS have that have been associated with having EMS? 1. Type 1 diabetes instead of type two; 2. Calcinosis a very painful skin condition; 3. Autoimmune hepatitis; 4. Motility problems of the gastro-intestinal tract or esophagus; 5. True scleroderma instead of merely "scleroderma-like" skin; 6. Very severe cognitive problems such as not being able to handwrite at all or to read at all anymore; 7. Unusual reactions to drugs; 8. Hearing loss, temporary - not sure about permanent; etc.

FAQ for February 2008: Is diabetes fairly common among those with EMS? Why might this be? I can't be absolutely sure, but I think that diabetes is indeed a fairly common secondary illness to EMS, although in some persons it probably occurs for reasons unrelated to EMS. From what patients tell me, there seem to be a lot of EMS diabetic patients. Reasons could include: 1) Heredity 2) Sedentary lifestyle 3) Poor diet 4) Increased risk because of having EMS itself (there is some evidence for that); 5) Weight gain due to lack of exercise, prednisone usage, etc. 6) Ordinary aging increasing the risk and so on.

FAQ for January 2008: Do people with EMS still experience muscle spasms? The results of a recent Survey I have conducted of 40 persons with EMS show that only one person of the forty answered an outright "No" to this question, and another said, "Very rarely." So 95% of the 40 still get EMS spasms in their muscles as we enter the 19th year since the Epidemic. Some respondents were pre-epidemic cases, so for them it's been more than 18+ years of living with EMS. If you add in the one person who rarely gets spasms, then more than 95% of respondents to this survey get muscle spasms. Some people get them more vigorously or severely than others, and some people get them more often than others. Sites of spasms and intensity, etc., differ from person to person and sometimes in the same person. Various factors seem to bring on spasms including tired muscles, general fatigue, cold weather, changing temperatures (changing weather), standing on hard surfaces, not enough usage of muscles, being low in magnesium, and so on.

Other FAQ's of the Month are found on the FAQ page at the bottom: EMS FAQ Page (updated regularly; most recent ones, scroll down)

I accept email with questions:

faith_rumph@yahoo.com My name is Faith, and I have had EMS since late July of 1989.

Toxic L-tryptophan: Shedding Light on a Mysterious Epidemic by William E. Crist - Excellent research done over 8-9 years. Recommended to those with a serious interest in EMS and LT.

ARTICLES, REPORTS, POLLS, BOOKS ON EMS, etc.

NOTE: Links have been updated as of November 2007, but if you find one that does not work, please let me know. It's easy to miss a few.

ISN's Voices of Scleroderma Vol. 2 (Sales of the book go to support Scleroderma and similar diseases. My EMS Story is published in the book which also has about 99 other stories and articles by medical professionals.)

Eosinophilia-Myalgia Syndrome: A Tragic Novel Disease by Marylin Faith Rumph; revision of an article written in 1999. This is not a long article and makes a good introduction to how others and myself got EMS, what the disease is like, similarities to Fibromyalgia, and safety of dietary supplements and foods. The reason Fibromyalgia is stressed is because the article was originally written for a local FM support group in Nevada.

Autoimmune Diseases & Eosinophilia-Myalgia Syndrome (EMS) - December 9, 2006. This Survey was written based on a questionnaire sent to persons with EMS. Replies from Oct. 25 to Nov.19 are included from 29 persons. A list of autoimmune diseases from the AARDA (The American Autoimmune Related Diseases Association) Web site was used to decide if a disease is autoimmune or not.

In Their Own Words: Comments by Patients with Eosinophilia-Myalgia Syndrome 17-plus Years after Onset (EMS Patients comment about life with EMS - final report of three from the Survey taken March 20-April 1, 2006) - Posted June 23, 2006

Miscellaneous Topics and EMS (Report on the following questions asked of 33 persons with EMS: Cancer, Anemia, Eosinophilia, Hypothyroid Disease, Osteoporosis, Dental Numbing with Septocaine, and Statin drugs) - Posted June 17, 2006

Alternative Treatments and Eosinophilia-Myalgia Syndrome (Poll of 33 persons with EMS in late March 2006; Posted May 2006)

EMS Writings (EMS Story by Patty Bell, an Editorial piece and poem by F. Rumph) Persons with EMS: Write if interested in contributing.

Major Complaints of Living with EMS (Poll of 32 persons with EMS; December 2004)

Poll on GE and EMS (Poll of 33 persons with EMS; June 2004)

Eosinophilia-Myalgia Syndrome Sleep Survey - Links Updated November 2007

Diagnoses since Onset of EMS (Poll of 26 persons with EMS; Fall 2003) - Has links to many health-related organizations at end of report

EMS and Eosinophil Count (Poll of 24 persons with EMS; Spring 2003)

EMS and Allergies (Poll of 25 persons with EMS; Winter 2003)

Legal Information Regarding EMS (Sites on EMS lawsuits; links to lawyer pages, etc.) Updated November 2007

Showa Denko K.K. Information (Editorial and links) - Updated November 2007

Eosinophilia-Myalgia Syndrome FAQ (including a section on 5-HTP and EMS; Updated Monthly)

Status of Pain in 37 Patients with Eosinophilia-Myalgia Syndrome (all pain, not just spasms) Don't forget you can also access all medical reports and other information on the Information Page.

EMS not Caused by L-Tryptophan (Possible Causes besides tainted LT)

What is Eosinophilia-Myalgia Syndrome (EMS)?

Symptoms of Eosinophilia-Myalgia Syndrome (EMS) (Acute, Intermediate and Chronic Phases)

Eosinophilia-Myalgia Syndrome Muscle Spasms Report (Based on a Survey of 28 EMS Patients)

Links (Disability sites, Social Security Disability, Chronic Illness sites, Internet Archive Site, etc. - Updated November 2007

Research into EMS and Similar Illnesses: Links, Suggestions, etc. - Updated November 2007


About the founder and author of this Web site:

Faith Rumph's Story: Eosinophilia-Myalgia Syndrome (My story on www.sclero.org Web site) - Link updated November 2007

About Faith (Musician and Writer)


Mission Statement:

To help persons with Eosinophilia-Myalgia Syndrome (EMS) and others who have an interest in EMS by providing (1) information about EMS with patients, doctors, and the public and (2) support for people with EMS, their families, friends, and caregivers through various means.

Copyright 2002-2008 Marylin Faith Rumph. All Rights Reserved. No part of this Web site, including writings of persons other than myself, may be published elsewhere on the Internet or in any other form or medium without permission. People may link to this Web site from other Web sites. Thank you for respecting the intellectual property rights of others on the Internet.