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:

  • 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).