Developing a definition for Multiple Chemical Sensitivity

One of the major problems for people with multiple chemical sensitivity (MCS) is lack of a widely accepted definition of the illness. The Chemical Injury Information Network (CIIN), a US based advocacy group, decided that this state of affairs has gone on long enough. They invited many of the world’s top physicians and researchers in the field of chemical sensitivity to attend a workshop dedicated to advancing a case definition for MCS.

Cynthia Wilson, President of CIIN, believes having a solid and credible case definition will unblock a variety of problems, including lack of official recognition of MCS, lack of solid research funding, and barriers to insurance coverage. Without a case definition, Wilson argues, there is no uniformity of standards. “When you don’t have a definition, any doctor anywhere can define it as they want.”

The two day workshop was held in June. Three work groups tackled different aspects of the problem. One group began to develop a definition of Multiple Chemical Sensitivity, and set out diagnostic guidelines for the illness. A second group evaluated tests which presently exist to determine whether any of these might provide objective confirmation of a clinical finding of MCS. This group concluded that although at this time there is no single accepted definitive test for MCS, a number of existing tests are promising. A third working group examined gaps in the existing data on MCS, and focused on establishing priorities for future research.
Wilson argues that its high time for a case definition. “We should have had one 50 years ago,” she says. “In the scientific world, if you don’t have a case definition nothing starts.”
Is there enough known about MCS to write a case definition? “They are never written in stone,” argues Wilson. “The Chronic Fatigue case definition has been revamped three times, [including] one major rewrite. A case definition gave people a place to start. As they learned more about the illness, they changed the definition. Wilson says, “I don’t expect the definition that comes out of this process will be the final definition. I hope we continue to learn and refine the definition, like any other illness.”

Wilson calls the workshop the beginning of the beginning. Following the workshop, ten physicians are working together to firm up the workshop conclusions into a draft case definition. The objective is to have a draft ready by the end of 2006.

When the doctors complete a draft, CIIN plans to circulate it widely for comment. “Not only will we look for comments from peer review, we are going to look for patient comments. We want the widest possible audience to comment on this. We have a lot at stake here,” says Wilson.
Once the comments are sorted through, incorporated or rejected, the final version will be circulated for physicians’ signatures. “Then we will go for publication,” states Wilson.