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
Twentieth Year Since Recognition and
Naming of Eosinophilia-Myalgia Syndrome (EMS):
1989 marks the 20th year
since the EMS Epidemic and the subsequent recognition and naming of EMS in
late 1989. Generally speaking, those who got sick in or prior to May 1989
are considered to be Pre-Epidemic Cases, and there are hundreds of those,
I believe. Most occurred in 1988 or 1987 but there were even a few cases earlier
going back to as far as 1984. All of us with EMS probably have mixed feelings
upon this "milestone" of 20 years. On the one hand, we feel happy
to be alive, but on the other hand, we are still sad for those we've lost and for
our own continuing struggles and frustrations. It is also a source of regret to us
that research into EMS has stopped almost completely, and that many doctors don't
even know what EMS is - some don't believe in it. And so we go on.
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.
NEW! Are there any new articles on EMS? Not much research goes on with
EMS these days, and it really began to decline around 1996; however, a few articles
directly or indirectly related to EMS come out each year. This one came out
in October, I think. This is the abstract. The title is "Immunogenetic
risks and protective factors for the development of L-trytophan-associated eosinophilia-myalgia
syndrome and associated symptoms." Authors: Okada, S; Kamb, ML; Pandy,
JP; Philen, RM; Love, LA; and Miller, FW.
NEW! (Nov. 23) There
is a new article and this is the abstract: "AHR
activation by tryptophan-pathogenic hallmark of TH 17-mediated inflammation in Eosinophilic
Fasciitis, Eosinophilia-Myalgia Syndrome and Toxic Oil Syndrome?" Authors:
Rieber, N; Belohradsky, BH.
Another article published in February of
2009 is "Neuromuscular
disorders associated with apical hypertrophic cardiomyopathy." Authors:
Finsterer, J. and Stollberger, C.
All articles have their abstracts on
PubMed. There are a few others listed for 2009 but they don't really directly pertain
to EMS. Some abstracts don't even mention EMS. One abstract, for instance, is about
Churg-Strauss; I don't know why it's listed under the EMS articles unless somewhere
in the article, EMS is mentioned, but EMS is not mentioned in the abstract.
(Article
from a survey I did last year):
MARCH 2009 - Prevalence of Several Disorders
Commonly Found in Fibromyalgia Patients Among Eosinophilia-Myalgia Syndrome Patients:
A Look at the Prevalence of Back/Spinal, Carpal Tunnel & Rotator Cuff Problems
& the Presence of Trigger/Tender Points in Those with EMS as well as the Presence
or Absence of Diagnoses of Fibromyalgia and/or Myofascial Pain Syndrome -
A SURVEY OF 46 ONLINE PATIENTS WAS DONE FROM LATE JANUARY TO MID-FEBRUARY
2009.
EMS FAQ Page (updated as needed; no longer
updated monthly or quarterly). The page is quite full as is.
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.
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. .
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.
Survey of Forty EMS Patients (Part 3)
- Questions 11 & 12 from a Survey done in October 2007.
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)
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 (Poll of
31 Persons with EMS; 2004)
Diagnoses since Onset of EMS (Poll of 26 persons with
EMS; Fall 2003)
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 April 2009
Showa Denko K.K. Information (Editorial and links)
Eosinophilia-Myalgia Syndrome FAQ (including a section on 5-HTP
and EMS; Updated Quarterly)
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) - Updated Links April 2009
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 Links April 2009
Research into EMS and Similar Illnesses: Links, Suggestions,
etc. - Updated Links April 2009
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 2002-2009 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.