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Discussion of NIH Workshop by NEMSN Board
Members
Board Members Attended NIH Conference
From left to right-
Joe Hayes, Robin
Burkin, Nancy Grant, Jinx Engstrom, Janet Vaught, Karen
Tonso and seated is
Julie Ann Allender.
Michael Bird was not present for photo.
The first "face to face" board meeting
was held October 21, 2004, in Bethesda
MD with Michael Bird, Julie Ann Allender,
Jinx Engstrom, Robin Burkin, and Nancy
Grant and acting as NEMSN President Joe
Hayes. President Sharron Lobaugh could
not attend. Past Board members: Karen
Tonso PhD. and Janet Vaught attended as
speakers.
The first evening NEMSN hosted a
reception for the conference speakers
which provided an opportunity for
everyone to get acquainted.
Joe said, “Michael Bird and I met with
Congressional staff members in an effort
to request research funding for EMS. We
can be very proud of NEMSN because we
have been pro-active in getting things
accomplished."
Michael suggested that because our group
is so small and our funds our dwindling
that NEMSN may want to become connected
with a larger similarly related group to
make future progress.
Robin Burkin, our Web Master said:
"Being able to meet one on one with the
scientists gave us a chance to make our
illness personal. One of the subjects I
found most interesting was the
explanation as to why none of the animal
models had come down with EMS.
It seems they tested contaminated
batches of LT on both mice and monkeys
but neither came down with EMS symptoms.
Their theory is that humans metabolize
the product differently than animals.”
“Another idea I found interesting came
from the FDA. Their representative
thought that EMS was not caused by
contaminants but by ingesting much
larger amounts than normal. This could
cause our bodies to produce a reaction
as if there were an infestation and send
out Eosinophils to deal with it.”
“I also wondered why there was no up to
date registry of people with EMS.
Apparently, due to the stigma of AIDS,
new laws were enacted to protect
personal privacies. Therefore, no
official government records can be
maintained,” said Burkin.
Most of the conference dealt with the
disease’s history and was old
information to NEMSN. It was good for
the agency heads of the NIAID and NAIMS within
NIH as well as CDC and FDA to have the
opportunity to review the information
together aiming at preventing new
epidemics of eosinophilic diseases,
which might occur in the future. The
review, however, helped to remind the
scientists to be on the alert for food
“poisonings” especially in light of the
age of terrorism.
The purposes of the meeting set by NIH
were threefold:
1. To review what has been learned
about EMS
2. To determine steps that might be
taken to prevent future epidemics
3. To identify gaps in our knowledge
and opportunities for future research.
Interesting Highlights of the
Conference:
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Dr. Naylor's presentation about Systems Biology which
was described as a new way to
investigate disease with an
interdependent science, combining
chemistry, biology, computer
science, and other global tools to
identify toxic events.
-
Dr. Collier, a Rheumatologist from Denver, did a study
which concluded that pure tryptophan
should be off the market. Others did
not agree because the electro
chromatograph display of various
"Peaks" could actually be hiding the
real culprit. "It must have been
something very miniscule." EMS was
around for years before the epidemic
and cases were reported. People
taking Tryptophan could have become
ill but cases were never reported or
diagnosed. (It is a very complicated
because SDKK sold batches to many
companies but the majority were not
"hot" batches that those of us in
1989-90 used.)
-
Dr. Lori Love, FDA presented similar findings, although
acknowledging that because
tryptophan is one of the essential
amino acids, some formulas and
products like "Ensure" need trace
amounts to provide complete protein,
the amount utilized by persons who
came down with EMS was excessive. Trytophan
could be 99% pure and still contain
contaminants. There are contaminants
in almost all drugs and the mystery
is how something so hidden causes
such a magnitude of this problem? Or
did this morph into some other
chemical in certain people.
-
Dr. Ruz discussed asthma compounds that turn "on"
fibrosis and then turn them "off"
but if the fibrosing continues to go
unabated, at a certain level it just
feeds on itself and becomes
self-perpetuating.
Dr. Clawu urged members of EMS to become
associated with the FMS Fibromyalgia
organization.
Nancy Grant suggested that other
associated symptoms including: "restless
leg syndrome, irritable bowel syndrome,
irritable bladder, cognitive
dysfunction, cold intolerance, multiple
sensitivities (chemicals, drug
intolerance, odors, noise, bright
lights), joint dysfunction, chest pain,
morning stiffness, numbness and
tingling, muscle twitching, feeling of
swollen extremities and so forth are
common to both EMS and Fibromyalgia.
Some NEMSN members have pointed out that
although there are many symptoms in
common EMS does not have the "11 of 18
tender points" characteristic of the FMS
patients.
Jinx Engstrom referenced an article from
Medicinenet: "Therefore, fibromyalgia is
different from many other rheumatic
conditions (such as
rheumatoid arthritis, systemic
lupus, and
polymyositis). In those diseases,
tissue inflammation is the major cause
of pain, stiffness and tenderness of the
joints, tendons and muscles, and it can
lead to joint deformity and damage to
the internal organs or muscles." Jinx
stated that she has always felt EMS
symptoms were closer to MS than other
illnesses”
The conference was informative although
very little attention was paid to
NEMSN's request to deal with effective
treatment for the chronic phase of EMS.
Dr. Julie Ann Allender commented on
this: "What I felt sad about was
realizing that the conference was really
for "others". Those of us who are still
alive and suffering the ill effects from
L-T are not in the picture. We will
never be looked at as patients who have
the potential to heal. Everything seemed
to lead to "the next time."
The physicians were astonished to see
portion of Julie Ann’s legs with
blotches of red, irritated blisters
proving without a doubt that many early
symptoms are still plaguing us and
getting worse.
Karen Tonso presented the research
conducted by NEMSN in 1999 and Janet
Vaught addressed the issue of other
health food supplements which continue
to cause illness. They both represented
us well and we thank them. (Photo by
Janet Vaught)
Results of the NIH Meeting in Bethesda,
MD October 2004
Two of our members,
Michael Bird and Joe Hayes, met with
Senator Specter and Representative Hoyer
requesting
funding for EMS in their upcoming
appropriations bill.
In the conference
report on H.R. 4818 is the
following language:
"The conferees
encourage NIAID, other Institutes within
NIH and other
appropriate federal agencies to provide
support for the study of
Eosinophilia Myalgia Syndrome (EMS) and
other immune mediated diseases that
manifiest symptoms like those of EMS.
These systemic illnesses require new
approaches, such as systems biology, to
understand root causes of disease
onset, to assess treatment options and
to understand clinical and
epidemiological aspects. EMS and
EMS-like diseases have afflicted
thousands, remaining incurable, and
continue to be difficult to diagnose."
The above language was requested for inclusion in
the conference report on H.R. 4818, the
omnibus FY2005 appropriations bill,
by Senator Arlen Specter
(R-Pennsylvania) and Representative
Steny Hoyer
(D-Maryland).
The conference report language helps in several ways.
It compels NIH to report back to House
and Senate appropriators on any
action they take or propose to take in
order to carry out the intention of
the language. It also serves as a marker
for grant proposals submitted to
NIH and its Institutes that suggest
carrying out research efforts regarding
EMS and other immune mediated diseases.
Finally, it gives us some language
to return to the appropriators with
progress reports and requests for
continuing or modified language in the
future (this should be done by the
end of February).
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