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):
Yahoo! group EMS
Discussion & Information Please consider joining if you are interested
in a serious group for information and discussion. New members welcome! About 60
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 Winter 2008.
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 Winter 2008.
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. Posted Winter 2008.
FAQ for November/December 2008: What are some of the most common recent complaints
of persons with EMS that you've heard about? I hear many complaints from people
with EMS today. I don't mean actual diseases but symptoms and conditions that are
passing, new, old and returned, or just puzzling physical or mental happenings. Lately,
I have heard from people with these complaints (in no particular order): 1)
Increased leg pain; 2) Severe itching of a sudden onset; 3) Continuing migraine
headaches; 4) Debilitating fatigue; 5) Many and diverse eye complaints; 6)
Many dental complaints; 7) New diagnoses of Sjogren's Syndrome; 8) Rapid heart rates;
9) Acute relapses of pain anywhere in the body; 10) Depression/Loneliness/Poor relationships;
11) Inability to drive or do things independently; 12) Problems with medications.
FAQ for September/October 2008: Again, I have been asked whether people with EMS
tend to use a lot of pain medication and what. According to a Survey on Pain
you can read on this site done in 2002, the top drugs used for pain in that group
of 30 were: 1) Vicodin (daily or as needed) - 20% of respondents; 2)
Darvocet - 13% of respondents; 3) A tie between Neurontin and Klonopin
- 10% each. But if you read that report you will find people who use everything from
Advil to morphine. People with mild EMS tend to use less medication. Some
persons have somehow managed to find other ways to deal with pain. And a few with
EMS report that pain is not actually their major problem. Perhaps cognitive dysfunction
is the major problem. Additionally, a few claim that they have quite minimal EMS
or that it's in a type of total remission or "gone." I don't hear from
many of the latter.
FAQ for July/August 2008: What are some of the more unusual diagnoses or problems
you've heard of that have been associated with having EMS? 1) Autoimmune Hepatitis
2) Gall bladder removal with eosinophils clustered in or near it instead of
stones 3) Gum loss without periodontal disease or other dental disease 4) Odd visual
"hallucinations" not due to psychosis or mental illness 5) Return
of symptoms that had ended years ago - say coming back in 2008 but had ended 10 or
more years previously 6) Calcinosis (painful skin lesions that are
hard and rock-like)
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.
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.
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 -
Diagnoses since Onset of EMS (Poll of 26 persons with
EMS; Fall 2003) - Links to health-related groups updated September 2008
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 Links September 2008
Showa Denko K.K. Information (Editorial and links)
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. - Links updated September 2008
Research into EMS and Similar Illnesses: Links, Suggestions,
etc.
About the founder and author of this Web site:
Faith
Rumph's Story: Eosinophilia-Myalgia Syndrome (My story on www.sclero.org
Web site)
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.