Environmental Project, 988 – Multiple Chemical Sensitivity, MCS – 3 Conferences, workshops, and reports on MCS

Multiple Chemical Sensitivity, MCS

3 Conferences, workshops, and reports on MCS

3.1 Activities in the US
     3.1.1 Conferences, workshops, and expert reports
     3.1.2 The US - The intersectorial government committee: Interagency
     working group
     3.1.3 The attitudes of professional medical organisations to MCS
     problems
     3.1.4 Comments
3.2 Activities in Canada
3.3 Activities in Europe
     3.3.1 Report from the Environmental Directorate of the EU, 1996
     3.3.2 Report to the British Health and Safety Executive (HSE)
     3.3.3 Report from the British Society for Allergy, Environmental and
     Nutritional Medicine (BSAENM)
3.4 Activities under the UN / WHO
3.5 Conclusions

3.1 Activities in the US

Since 1990 several governmental institutions have sponsored or co-sponsored measures aimed at supporting MCS research.

The following is a chronological presentation of the activities mentioned in the Interagency Report (1998).

3.1.1 Conferences, workshops, and expert reports

National Research Council (NRC) Workshop 1991

The US EPA had scientific experts from all relevant fields invited to a workshop, which was to formulate an MCS research program. The workshop had three working groups covering clinical research, exposure and diagnosis, and epidemiological research respectively (National Research Council, 1992a).

In Annex B (Recommendations from NRC workshop 1991) is a list of recommendations from the working groups. The list includes all recommendations, which at that time were considered relevant and adequate if a final description of MCS and the mechanisms behind it was to be made.

Workshop on MCS 1991 Association of Occupational and Environmental Clinics (AOEC, 1992)

The AOEC, which represents the occupational and environmental clinics in the US, arranged a workshop with clinically oriented goals such as definition of illness, description of circumstances leading to illness, treatment strategy, and pathogenesis (illness mechanisms). The problem formulation and the recommendations from this workshop were within the scope of the NRC workshop ( see Annex B).

Some of the recommendations have led to research activities, which are presented in chapter 6.

NRC report on immuno-toxicological bio-markers, 1992

This report from a sub-committee, which was set up during the 1991 workshop, consists of detailed recommendations concerning immunological research. This accentuates the focusing on research in immunological causal mechanisms at the beginning of the 1990s (National Research Council, 1992b).

Expert panel for MCS set up by the Agency for Toxicological Substances and Disease Registry (ATSDR)

In 1993 Congress granted US$ 250,000 for a workshop on chemical sensitivity at low chemical doses and other impacts which the ATSDR was to arrange. The grant was decided due to widespread public concern that chemicals from waste landfills and fields treated with pesticides could cause MCS.

The ATSDR established a panel, which was to advise the government concerning measures necessary to fulfil the wishes of Congress (ATSDR, 1994). The panel included representatives from universities, clinical medicine, public health, industry, MCS patients, and the government, as well as observers ("outside" experts). The panel drew up a prioritised list of MCS projects called "Clean sites" (1993).

The recommendations in the list were within the scope of the large research catalogue from 1991. A few of the recommendations were new and more action oriented, such as:

The establishment of an intersectorial committee for the development of training facilities for the members of the committee and for new members from other institutions, and
Methods for facilitating the attachment of MCS research to other ongoing projects and the development of database facilities for recording and treating the data attained.

These recommendations have still to be followed.

National conference on low-dose exposure to chemicals and neuro-biological sensitivity, 1994

This meeting was organised by the ATSDR under the 1993 mandate from Congress, as a direct consequence of the recommendations from the expert panel. The importance of the olfactory system in neurophysiological and psychological causal mechanisms and possible connections between psychological and immunological reactions were discussed. Some of these mechanisms are described and discussed in chapter 6.

Instead of a traditional final report with results and recommendations, Kipen (1994) has prepared an official status report with new recommendations, which focus on improving the still persisting lack of co-ordination and co-operation between scientists. He proposed that all scientists should accept to adhere to a common set of criteria and requirement standards regarding definition of illness, selection criteria, methods of examination, establishment of prevalence, and definition of risk factors.

The course taken by this conference expresses a shift in research from research into immunological illness mechanisms to other areas. It also shows that sufficient co-ordination among scientists concerning definition of illness and standardization of methods is still lacking.

Public survey by the California Health Service 1994

The 1993 ATSDR meeting also recommended the development of research methodologies for detecting risk groups among the wider public. The California health service received financing for this task and delivered a final report in 1996 (California Department of Health Services CDHS, 1996). Questions concerning MCS had been incorporated into an already existing public survey program. The report recommends use of the questionnaire developed for this investigation as a basis for a new, more thorough study. Such a study was never made. Some of the figures on prevalence shown in chapter 5 are from this investigation.

Workshop on controlled exposure investigations 1995, National Institute of Environmental Health Sciences (NIEHS)

This workshop was arranged in New Jersey as part of a national program "Superfund Hazardous Substances Basic Research and Training Program", which is managed autonomously by each state. Funding came from the NIEHS, which is a unit under the National Institute of Health (NIH). The aim was to establish a multidisciplinary research program, still for the purpose of gaining a clear understanding of the illness mechanisms of MCS. The participants had backgrounds in neurophysiology, immunology, epidemiology, toxicology, and biology.

The outcome was four main recommendations:

Clear criteria for the selection of subjects to be examined
Full control of standardized exposure studies (Until now, no exposure experiments have given positive results)
Incorporation of conditioned reflexes and neural sensitisation (these concepts are explained in chapter 6) in the assessment of controlled provocation tests
Incorporation of case-control design in epidemiological investigations

Conference on experimental MCS research 1996, National Institute of Environmental Health Sciences (NIEHS)

The conference involved the same team as the workshop mentioned above. Both clinicians and experts from theoretical research environments within MCS-relevant fields participated. Five working groups discussed the following subjects:

Empiric procedures for studying toxic-induced loss of tolerance (TILT)
Conditioned reflexes (Pavlov) and MCS
Psycho-neuro-immunological mechanisms
Neurogenic inflammation
Neural sensitisation and "kindling" mechanism

The introductions from the five groups and all of the presentations have been published in a special issue of "Environmental Health Perspectives" (no. 105, supplement 2, 1997).

Annex C (Main proposals from the EOHSI/NIEHS conference) contains the main proposals from the conference. It is an operational follow-up to previous activities, written by experts who have met on numerous occasions during the past 6 years to discuss and formulate fields of research and priorities. The same demands concerning standardization and quality control and better co-ordination and ”listening to one another” in this interdisciplinary research group are put forward.

It was apparently the last meeting with nationwide participation in the US, which was entirely devoted to MCS.

Report to Congress on Research on Multiple Chemical Exposures and Veterans with Gulf War Illnesses, 1998

The House of Representatives commissioned the report. The report mentions a consensus conference on multiple chemical exposure as seen in the light of the reported cases of Gulf War Syndrome and MCS, to be arranged under the Centre for Disease Control, as well as a planned research project "Chemical Mixtures in Environmental Health". The results from this conference have not yet been made public.

3.1.2 The US – The intersectorial government committee: Interagency working group

The most prestigious intersectorial working group on MCS, which has been set up under the US Ministry of Health is the "Interagency Workgroup on Multiple Chemical Sensitivity". The working group has included representatives from national ministries and administrations and from environmental and medical science research environments. It has produced "A Report on Multiple Chemical Sensitivity (MCS)", which is now available as a Pre-decisional draft (Interagency report, 1998).

The report is aimed at politicians, civil servants, scientists and physicians dealing with MCS problems.

It is based on a thorough review of the scientific literature, of expert hearings, of previous and present actions by the authorities, and of recommendations on technology and strategy.

The main conclusion of the report is that definite proof of MCS as a distinct disease is still (in 1998) lacking. The recommendations constitute a continuation of the cited recommendations, which are shown in annexes B, C, and D.

Public hearing on the report

After being assessed by an expert panel, a non-official version of the report was subject to a public hearing. The 460 responses to the hearing have been summarized in a report (Summary of Public Comments Received for the Multiple Chemical Sensitivity Report, 2000, Center of Disease Control, Ministry of Health).

Comments were received from professionals in the health service, from private citizens with and without MCS, and from organizations. Public employees were the most positive towards the report, private citizens the most critical.

Critical comments:

The participation of a representative of the chemical industry creates grounds for conflicts of interest, which weakens the report as an impartial document.
The report should also contain information from other government authorities and from clinical ecologists who treat MCS patients.
The list of references is not complete.
The report should also recommend ways of avoiding exposure.
Professionals in the health service, authorities, employers, and the public should use the report.

Positive comments:

The report is a good starting point for recognizing MCS in the future.
The report summarizes the most important problems related to MCS.
The report is an important tool for those working with MCS.

3.1.3 The attitudes of professional medical organisations to MCS problems

Several professional medical organizations have taken part in the debate on MCS. These include the academy representing the clinical ecologists (AAEM) and five organizations under the American Medical Association (AMA) (The most important comments are placed within inverted commas):
The 1992 AAEM report presents an holistic model for the pathogenesis of all environmental illnesses, including MCS (see chapter 6).
American College of Physicians (1989) “Environmental physicians performing provocation tests should define the illness, which they are examining and treating, and they should adhere to current criteria for experimental design, such as the blinding principle and documentation of procedures and results.”
American Medical Association (1992). “MCS should not be recognized as a clinical syndrome”.
AMA, American Lung Association, US EPA, consumer organization (1995) “Suspicion of MCS demands a thorough evaluation of the medical history. The case must not be dismissed as a psychiatric disorder. The possible existence of psychogenic problems should be looked into and the need for an examination by a specialist, e.g., an allergologist or a lung specialist, should be assessed.”
American Association of Allergy, Asthma and Immunology (1997) ”None of the many theories, which have been put forward, have been proven.”
Proposal from a consensus group consisting of 31 scientists and clinicians, all experts on MCS research and the treatment of patients (Archives of Environment Health, 1999), on a clinical protocol, see chapter 7.
American College of Occupational and Environmental Medicine (1999) is the most competent medical body concerning MCS. The working group emphasizes the importance of the opinions of physicians for decisions on compensation and social matters. The members recognize that proof of a connection between environmental factors and the MCS mechanism is still lacking. Therefore, they find no scientific grounds for environmental intervention (investigations and regulations) for the purpose of reducing MCS frequencies. This does not, however, apply to problems of indoor climate.
The ACOEM supports a bio-psychological illness model, whereby they support the hypothesis behind a complex illness mechanism consisting of both psychological and physiological factors.

All organizations agree it is important for physicians to show real empathy for and interest in MCS patients, and scientific results should be published in scientific journals using peer review.

3.1.4 Comments

Many conferences and workshops have been arranged in the US during the period 1990-1998 with the aim of discovering the causal relations concerning MCS. But the cause and mechanism of MCS has still not been discovered. New professional high-quality proposals for research activities, which should produce more unambiguous scientific results, are continuously being put forward.

Annex D (Topic list of recommendations for MCS research) gives a list of the most important recommendations from the seven conferences mentioned above, arranged according to topic.

Topics recommended for research at most of the meetings are:

Epidemiological studies
Definition of illness
Provocation tests.

Most of the recommendations were presented at the first conference in 1991. The following conferences rather seem to be repetitions of the same “MCS-rituals”. It is surprising that all of the experienced scientists continued to arrange new workshops and conferences, in spite of the fact that in the end they were always forced to conclude that the previous recommendations had not been followed and no progress had been made.

Tremendous resources and many hours of research have been put into a national effort, the outcome of which apparently does not measure up to the investments.

3.2 Activities in Canada

A workshop on Environmental Sensitivities was arranged in 1990. A workshop on MCS and the relevance to psychiatric disorders was arranged in 1992.

The Canadian experts discussed issues relating to MCS in a wider context than was done in the US. They discussed the physical, social and economic problems of the patients and the impact of MCS on the system of treatment by the health service, on the social services, and on the workplaces.

The following recommendations were adopted:

An MCS patient must be assessed in the light of his/her daily functions rather than as a preparation for diagnosis.
Criteria for diagnosing MCS as a) possible, b) probable, and c) highly probable were established.

For a number of years, the Canadian environmental and health authorities have been dealing with several preventive initiatives against the private use of pesticides and the use of fragrances in public places. Health Canada (Canada's health authority) has tried to recognize MCS, together with two other environmental illnesses, in order to create possibilities for social compensation to the victims (see also chapter 8).

Comment

The Canadian system seems to accentuate social and prophylactic aspects in relation to MCS comprehensively, whereas in the US focus is set more narrowly on an objective system of diagnosis.

3.3 Activities in Europe

3.3.1 Report from the Environmental Directorate of the EU, 1996

An international group of experts was given the mandate by the Environmental Directorate under the European Commission (DG Environment) to investigate the circumstances concerning chemical sensitivity in selected countries, including Denmark, Germany, Sweden, Norway, Belgium, The Netherlands, Great Britain, and Greece (European report, 1994).

The report “Chemical sensitivity in selected European countries: an exploratory study” was produced by 11 scientists from Denmark, Germany, Greece and the US. The main author was N. Ashford, who has written the book “Chemical Exposures” together with Miller. The investigation concept and the formulation of the questions, which were posed to representatives from the nine countries, were based on the way of thinking in the US at that time. Few Europeans were familiar with this way of thinking at that time. The report has never been accepted and officially issued by DG Environment.

The report is based on information from single key persons in each country, who had collected information in their own country. The information from each country consists of answers to the same questions, and these can be grouped under exposure, information from patients, relevant investigations and research, and plans for the future.

The result presents rather haphazard and diverse pictures of the European countries, which cannot be compared to each other. This can be due to the way in which the material was collected. The questions are based on experience and knowledge from the US, i.e., concerning possible causal hypotheses and target groups. The questions may have been misunderstood, or they may have been put to the wrong people.

The report concludes that MCS-like situations occur in all European countries, although each country has ”its own” MCS cases with their distinct types of exposure and illness.

Denmark is said to have diagnoses of illness and chemical exposures, which are possibly similar to MCS. Some of the information from the report is shown in chapter 4.

3.3.2 Report to the British Health and Safety Executive (HSE)

The Institute of Occupational Medicine in Scotland was asked to review multiple chemical sensitivity. With Graveling as main author, five of the employees of the institute wrote a comprehensive report, which answers the questions:

Has exposure to chemicals, including pesticides, in very small doses been shown to produce symptoms in humans?
Is there any documentation that these symptoms are due to a physiological or a psychological process?

The report contains a very detailed and thorough review of the different hypotheses for illness mechanisms (Graveling, 1999). Although it does not give precise answers to the two questions, the authors conclude, on the basis of epidemiological investigations, that MCS is a reality.

3.3.3 Report from the British Society for Allergy, Environmental and Nutritional Medicine (BSAENM)

The British Society for Allergy, Environmental and Nutritional Medicine is made up of British physicians from several fields of medicine. They have produced a comprehensive report on MCS with strong emphasis on the clinical ecology illness model. The symptoms are connected to food allergy, and an allergic reaction with no apparent immunological traits is among the causal mechanisms mentioned. Several medical histories are discussed, of which some do not fulfil Cullen's criteria (Eaton, 2000).

3.4 Activities under the UN / WHO

International Programme for Chemical Safety (IPCS) Workshop in Berlin 1996

One of the recommendations in the report from the European Commission was to arrange a conference for all European experts on MCS, with the aim of discussing the situation in Europe and planning a co-ordinated effort on information and research on MCS. As mentioned above, the report was never published and the EU did not follow the recommendations.

On the other hand, the IPCS (International Programme for Chemical Safety) under the WHO, ILO, UNEP and the German government arranged an international workshop in Berlin in 1996. Experts from the US and Canada and from a few European countries were invited to participate. A representative from the DG Environment also participated, as did several representatives from the chemical industry (IPCS- report of multiple chemical sensitivities, 1996).

The workshop compares to the meetings in the US mentioned above. The same experts from the US participated. A final document from the workshop has never been published, because the participants could not agree on the conclusions. 80% could not support the main conclusions.

The WHO has done nothing since this conference (pers. com. Dr. Younes, IPCS/WHO Geneva, 2001).

3.5 Conclusions

This section describes the scientific activities on MCS that the health authorities carried out with support from the US government. The proposals for MCS research projects shown must generally be regarded as being of high quality and relevant, and they can to a great extent be an inspiration to research in Europe/Denmark.

Relatively little has come out of the many research projects. The causal mechanisms of MCS have not been clarified entirely.

The report from the working group under the US government has not been approved officially and published.

MCS is not recognized officially as a disease, and no precise methods of diagnosis, examination, and identification of groups at risk exist. The clinical ecologists and the established physicians have not approached each other.