Chronic EMS Autoimmune Study
By Kevin L. McKinley, M.D.
Dept. of Neurology/Neuromuscular Diseases
Ochsner Clinic, New Orleans, LA
As we move into the 8th year of the medical odyssey known as the
Eosinophilia-Myalgia Syndrome, I certainly hope that the medical community is
able to reach an agreement as to the most likely cause of continued symptoms in
patients who suffer from EMS, to put it simply: "What Causes Chronic
EMS." More likely than not, there will be more than one reason for
continued symptoms. In one patient we may find one reason and in another patient
we may find another. I personally feel that a significant number of patients
with continued symptoms related to EMS suffer from a chronic autoimmune
condition. In other words, many patients have an overactive immune system which
is causing continued symptoms of fatigue, muscle pain, and memory dysfunction.
From the start I would like to say that my opinions are not necessarily those
of the majority of EMS experts. Unfortunately, I do not feel that my colleagues
have offered any reasonable explanation for chronic EMS (with a few rare
exceptions that involve some high-tech research that has revealed some unusual
findings that are not readily explainable, such as altered tissue magnesium and
Early in the study of EMS I split with my colleagues because I felt it was
unethical to accept research funding from Showa Denko K.K. I personally did not
feel that I could evaluate the EMS epidemic in the proper fashion if I were
influenced financially and emotionally by Showa Denko K.K. I mention this as one
reason why my personal theory regarding the immune mechanisms of chronic EMS has
not gained more widespread acceptance within the medical field. There are
multiple other reasons why my theory has not been accepted but, perhaps most
importantly, I may just be wrong.
My theory is that many patients with chronic fatigue, muscle pain and memory
problems following EMS have an overactive immune system. Your immune system is a
very complex thing which contains cells such as neutrophils, eosinophils,
lymphocytes, and macrophages. It contains proteins such as complement and
immunoglobulins, and it involves a number of complex chemical signals that help
coordinate the whole system, including cytokines and interferons.
In a number of medical conditions like lupus, multiple sclerosis, rheumatoid
arthritis, and EMS, the immune system is known to be overactive. In EMS during
the early stages of the illness, we found evidence of the abnormal immune system
response on multiple blood tests and in tissue samples from a variety of organs.
In the early stages (the first six months of EMS), the degree of immune system
overactivity was incredible. An absolute five-alarm "immune" fire
raged throughout the tissues of many patients who suffered from EMS. I was one
of the first pathologists to describe the microscopic findings in the nerve,
muscle and fascia of patients with EMS.
The immune system was dissolving the tissue and choking off the blood supply.
These findings weren't mild. This was a true five-alarm fire. I personally
believe in many patients a smoldering "immune" fire has continued and
is responsible for many complaints.
One of the main reasons I hold this belief is based upon the results of
research that I performed at the Baylor College of Medicine in Houston, Texas.
We followed seven patients with EMS into the late stages of their illness.
During this time we used a blood test known as the soluble interleukin-2
receptor to monitor the level of overactive immune response. When some
components of the immune system are overactive, the blood level of this test
rises. In five of our seven patients, symptoms of chronic EMS developed, and in
these same five patients this blood test remained abnormally high.
Interestingly, when patients improved from specific treatments such as
plasmapheresis (a blood cleansing procedure) or Prednisone, the blood test
values also significantly improved. This correlation between symptoms and this
blood test abnormality suggested that there was a link between the immune system
activity and the chronic fatigue, muscle pain, and cognitive dysfunction our
patients suffered. Our results are published in the journal, Muscle and Nerve,
September 1993, pages 947-951. Unfortunately, this was a very small study, and
the results of this study did not meet with an enthusiastic response from the
EMS community of physicians.
A group of researchers in Spain took interest in our paper and performed the
same blood test on 12 patients suffering from chronic symptoms from the Toxic
Oil Syndrome, the medical illness that most closely resembles EMS and was
triggered by ingestion of contaminated cooking oil in Spain in 1981. Of the 12
patients with chronic TOS symptoms of muscle cramps and pain, eight had elevated
levels of the soluble interleukin-2 receptor. Their results are published in
Muscle and Nerve, October 1994, page 1228. Based on this information it seems
likely that the immune system has remained overactive in two-thirds of patients
with chronic symptoms of TOS, an illness that is almost identical to EMS. If
this holds true for EMS, doctors will be able to try treatments, monitor your
blood tests and symptoms for signs of improvement, and hopefully help you feel
So where do we start? Unfortunately, patients with EMS are rather rare. For
argument's sake, let's say there are 1,000 patients with chronic symptoms of EMS
spread across the United States. This would mean that it would take a city of
1,000,000 to find four patients with EMS in one place. This makes it very tough
on doctors to do any sort of research. It may be necessary for members of the
EMS support groups to become involved in their own health care if we want to
answer some of the questions that could lead us to successful treatments for the
chronic symptoms of EMS. We need several key things to get even the simplest
First, we need 30 to 50 people that had definite CDC-defined EMS (severe
myalgia, eosinophils of over 1000, no other illness to explain the problem).
Ideally, all would have onset of symptoms between 1989 and 1990. Furthermore,
all would have received a diagnosis of EMS from a respected expert in EMS or a
This group would currently suffer from chronic severe myalgia and fatigue.
Most importantly, this group did not have myalgia, fatigue, or fibromyalgia
prior to EMS. This group would need to have some lab testing to look for chronic
immune abnormalities and would need to have a local doctor willing to cooperate
with ordering tests and giving the patient the results. The local doctor will
also serve to ensure that only eligible patients are included in the study and
to protect confidentiality. Anyone considering participation in this project
needs to discuss all aspects of this article with their local doctor and allow
him/her to help decide if you would be a good patient for this study.
The results would need to go to a central location for analysis. It would be
ideal for the patients to rank their symptoms of fatigue, myalgia, cramps,
numbness, and memory problems on a 0 to 10 scale, with 0 being no problem and 10
being the worst problem imaginable. They should also list the number of
"good hours" they have in a day and the number of "good
days" in a week. I would also like them to list degree of total disability
they suffer from 0 to 100%.
The tests I feel would be most helpful are the ESR, CRP, RA, and soluble
interleukin-2 receptor. The first three tests are routine and could be done at
any lab, but the last one is used to monitor transplant patients' immune
functions and is only available at large centers and, in my experience, is the
most important of the tests.
There are a number of additional blood tests that may also be useful but can
be rather expensive and are sent by mail to reference laboratories. An easy way
to get a large panel of tests is to have your doctor order the immunoserological
panel from Immunosciences Lab, Inc. (Beverly Hills, CA; (310) 657-1077) which
includes 35 tests that look at many aspects of the immune system.
In order to assure confidentiality, each participant in the study may wish to
photocopy their lab results and then cut their name off or cover it with
white-out. They should mail the nameless data, along with their physician's
signed sheet, to the central collection center. To make sure the data does not
get confused, all three sheets should be identified by your date of birth.
If the EMS Support Group is able to coordinate an effort such as this, and 30
to 50 patients are able to rank their disease severity and get the above
testing, the medical community would gain some important insight into chronic
EMS. If I'm right, we may be able to effectively treat the chronic fatigue,
myalgia, and other problems so many of you suffer.
If I'm wrong and these tests don't provide helpful information, there are
several other potentially treatable causes of chronic symptoms. Many EMS doctors
feel that chronic EMS symptoms are either due to depression or fibromyalgia, and
both of these illnesses may respond to treatment. Some experts feel the chronic
symptoms are motivated by lawsuits and hopefully everyone will be better once
the lawsuits are over. Some experts deny there ever was EMS, and say this whole
thing is one big mix-up. There are several other ideas other doctors have
I hope you will look at the above list and see if you may explain a lot of
your current problems because of depression, fibromyalgia, legal issues, or
other medical problems. If so, please exclude yourself from this project (if it
gets going). If the results of this project are impressive, it may be possible
to next sort out patients who have both significant contributing illness
(depression, fibromyalgia, others) and immune overactivity. But for now, I hope
that we can study a rather small number of EMS patients that are affected by
chronic EMS without a history of significant depression or fibromyalgia.
A project like this takes a lot of work. I wish to congratulate anyone who
has read this and is now saying, "Yes. I'll do my best to honestly report
my symptoms and their severity, and I'll ask my doctor about checking some lab
tests." Hopefully, we can designate someone to collect and organize the
results, and next year you'll turn on your computer or open your EMS newsletter
and get to read the results.
(C) Copyright 1997 Kevin L. McKinley, M.D.
Each person should seek the advice of their own medical professional for their own situation. The information contained in this article is of a general nature.