How opponents of MCS and EHS created the term Idiopathic Environmental Intolerance

 

 

In the early 1990s major industries realized that if MCS became accepted it would cause them major financial hardship. One way to ward off the threat was to attack the legitimacy of MCS by changing its name.

 

Keywords:  chemical sensitivity, MCS, electrical sensitivity, opposition, history, Idiopathic Environmental Intolerance, Environmental Sensitivities Research Institute, ESRI      

 

A scientific workshop was held over three days in Berlin in February 1996. The purpose was to discuss MCS, including whether it was an organic (i.e. "legitimate") or a psychosomatic illness.

 

Most of this article is based on the report, which provides a narrative of the meeting, its conclusion and appendixes listing the participants, etc. (IPCS, 1996).

 

The workshop was convened by the International Programme on Chemical Safety (IPCS) together with three German government agencies. The IPCS is associated with the World Health Organization, though some accuse it of serving the interests of the chemical industry (Abrams, 1996).

 

It was an invitation-only meeting with 17 MCS experts and two officials. The host country, Germany, was represented by seven experts, the United States also by seven. The countries of Britain, Canada and Sweden each by one person.

 

One invited expert, Dr. Ronald Gots, was representing the Environmental Sensitivities Research Institute (ESRI) in the United States. ESRI was an industry-funded organization that actively worked to undermine the legitimacy of MCS through speeches and newspaper articles. The year before, ESRI had paid for an article that was brought in many newspapers and made to look like a regular news story. It stated that MCS "exists only because a patient believes it does and because a doctor validates that belief" (McCampbell, 2001; Donnay, 1997; Ashford, 1998).

 

Dr. Gots was also director of the National Medical Advisory Service, which provided medical experts to assist corporations sued by people with MCS (Ashford, 1998; Wilson, 1996).

 

Another invited expert was Dr. Herman Staudenmayer who was a psychologist and professor at the University of Colorado. He was also an outspoken opponent against accepting MCS. During a 1990 medical conference at the San Francisco Hilton his anti-MCS speech was shut down by demonstrators (Hileman, 1991; EI Wellspring, 2018).

 

Besides the 17 experts and two officials, there were 18 "representatives and observers." Twelve of them were from various German ministries and agencies. Then there were six people from three "non-government organizations" (IPCS, 1996).

 

There were thus a total of four non-government organizations (including Dr. Gots' ESRI), and all were closely aligned with industry interests, despite their bland names. In fact, some of their representatives were full-time employees of the chemical industry, including BASF, Bayer, Monsanto and Coca Cola (Ashford, 1998; Abrams, 1996).

 

MCS patient groups, environmental, consumer or labor organizations were not represented at all at this invitation-only meeting (Ashford, 1998).

 

The only person present at this workshop that is known to be fully accepting of MCS was professor Claudia Miller from the University of Texas.

 

Absent were prominent physicians who actually treated people with MCS, such as Drs. William Rea and Grace Ziem, or university types such as Iris Bell, Nicholas Ashford and Mark Cullen.

 

The presentations

The first day of the workshop there were 18 short presentations by the experts. The speeches are briefly summarized in the workshop report (IPCS, 1996).

 

Many of the presenters stressed that the lack of an accepted definition of MCS was a major hindrance to conducting research on MCS, and there was much about it that was not understood and was at odds with current understanding of toxicology. Also, there didn't seem to be diagnosable organ damages.

 

Some also pointed out the similarities with chronic fatigue syndrome, Gulf War Syndrome, and a German phenomenon called "wood preservative syndrome." (The wood preservative was pentachlorophenol, trade name Lindane; Ashford, 1998: ch 7 & 8). Two presenters also noted a possible similarity with electrical sensitivities.

 

Four of the speakers strongly promoted a psychological explanation of MCS, while the majority seemed to straddle the fence whether MCS is a psychological or a "legitimate" illness, or a combination.

 

Professor Staudenmayer focused on his small study that found women with MCS had a higher likelihood of childhood sexual abuse, which he used to promote the psychosomatic explanation of MCS. (This finding was later disproved by a larger study; Bailer, 2007.)

 

Professor Altenkirch of Spandau Hospital in Germany, made two presentations, including a video with three MCS patients. One showed signs of paranoia and drug abuse, another had severe epilepsy while the third was severely bipolar (manio-depressive).

 

Dr. C .J. Gothe was a corporate physician in Sweden. He lumped MCS together with electrical sensitivity and people who had problems with dental amalgams. He called them Environmental Somatization Syndrome.

 

Getting to work

The second and third day of the workshop were dedicated to discussions and reporting. The major objectives were:

 

Renaming MCS

A number of the participants wanted a different name instead of MCS. This was especially promoted by Dr. Gots and Dr. Gothe, two of the promoters of labeling MCS as psychosomatic.

 

Dr. Gots wanted a "less categorical" name, that was "less suggestive of causation" (i.e. to distance MCS from "chemicals"). (IPCS, 1996).

 

The group identified no less than 26 names that had been used in the popular press or elsewhere, such as "Chemical AIDS," "Universal Allergy," "Cerebral Allergy" and "Total Allergy Syndrome."

 

A number of alternative names were suggested, including:

 

Environmentally Associated Symptoms

Environmental Somatization Syndrome

Multiple Chemical Intolerances

 

The name that was acceptable to the most was Idiopathic Environmental Intolerances, IEI, with the understanding that "idiopathic" means "unknown cause" (though many interpret it as synonymous with psychosomatic).

 

Since the discoverer of MCS, Dr. Theron Randolph, had died the year before it would be natural to name it after him (i.e. "Randolph's disease"). That would also be a neutral name, though perhaps not acceptable to those who promoted the "psych" model, and thus wanted the "idiopathic" name.

 

The conclusion of the workshop report states that "MCS should be discontinued because it makes an unsupported judgment on causation" (IPCS, 1996).

 

Other work

The group also worked on a better definition of MCS and suggestions for further research. None of this work appears to be of real consequence.

 

The protests

In 1991, the foremost magazine serving the chemical industry stated:

 

Clearly, the economic stakes in this issue are very high. If MCS is eventually verified as a definite medical illness ... the chemical industry could be faced with many more thousands of very costly lawsuits. (Hileman, 1991).

 

An internal document created by the Chemical Manufacturers Association also spelled out the problems MCS could create for its members. One of the suggested remedies was to work closely with physicians opposing MCS (CMA, 1990).

 

The group assembled in Berlin was not impartial. Using a "stacked" group of people is a well-known method to produce reports and statements that serves special interests, while appearing to be impartial (McGarity, 2008).

 

The chair of the meeting, Dr. Howard Kipen, with another participant, Claudia Miller, and 58 other physicians, who were not invited, sent an official protest to the World Health Organization (Abrams, 1996).

 

They complained about "improper influence by business interests" at the meeting, and that the meeting sponsor, IPCS, had in the past shown itself to be under "excessive influence by business interests," where they have repeatedly seated "full-time employees of chemical corporations at the table as NGO representatives," as they did here.

 

They also stated that: "There was little distinction made between participants and observers at this meeting: observers were allowed to actively participate in discussions, and votes were unrecorded" (i.e. the observers might have participated in the voting).

 

The protests achieved very little, except that the final version of the report was up front labeled with a statement that it does "not necessarily represent the decisions or the stated policy of the United Nations Environment Programme, the International Labour Organization or the World Health Organization." (IPCS, 1996).

 

Since the final report was contested, it was not to be published in a medical journal. But it happened anyway, apparently with assistance from Dr. Gots' anti-MCS organization ESRI (Ashford, 1998).

 

Despite the protests, some of the participants actively promoted the new term and the disputed report's conclusions (Staudenmayer, 1997; Baird, 1997; Wilson, 1996; Carruthers, 1996). The "idiopathic" term was from then on used in some scientific papers, especially those that promoted the belief that MCS was purely a psychological problem. Much later it started to appear in more neutral publications.

 

IEI and electrical sensitivity

The World Health Organization convened a workshop in Prague, the Czech Republic, in 2004 to discuss electrical hypersensitivity (WHO, 2004).

 

There were 31 participants from twelve countries. 21 were affiliated with a university or national institution. The Swedish EHS community sent one representative. The affiliations of the remaining nine people are murky; they probably had some sort of industry connection.

 

One participant from the 1996 Berlin conference was present again in Prague: Herman Staudenmayer from the USA.

 

The report is only eight pages, so we don't know much about what happened during the meeting. There were three work groups, which each reported separately in the report.

 

The "Characterization, Diagnosis and Treatment" group was headed by Lena Hillert from Sweden, who was a prominent opponent of EHS.

 

Like at the Berlin conference, the group decided to distance EHS from its cause and call it "idiopathic."

 

The term Idiopathic environmental intolerance (Electromagnetic field attributed symptoms), or IEI-EMF, is proposed to replace terms that imply an established causal relationship between symptoms and electromagnetic fields...

 

To further delegitimize EHS, they also stated:

 

...IEI is not to be used as a diagnostic classification ... diagnosis should be based on the most pronounced symptoms (e.g. headache)...

 

And, indeed, the World Health Organization has continued to refuse issuing a specific diagnostic code for EHS.

 

The "Research Needs" group also supported using IEI as the new term, though one participant, Olle Johansson from Sweden, did not join the consensus.

 

The "Policy Options..." group stated that WHO should produce a fact sheet about EHS, which does not "attribute causality to EMF," does not include prevalence data and should "discourage measurements in homes."

 

This group also advised governments to not use EHS as a basis for disability, and not lower any radiation limits.

 

Comments on WHO

The World Health Organization prefers to use such panels of experts to guide their actions, rather than using other methods such as systematic reviews, etc. (Oxman, 2007).

 

This of course means WHO can be manipulated by "stacking" the panels with one-sided opinion, which is sometimes done by special interests (McGarity, 2008). Another example of a stacked panel associated with WHO is ICNIRP, which advises on radiation limits for mobile phones (Hardell, 2017). This was clearly the case with the Berlin meeting. The objections filed by so many scientists in the field may be the reason WHO did not adopt the term Idiopathic Environmental Intolerance, though some people have falsely claimed it did.

 

The 2004 Prague meeting seems to have guided the WHO, since it continues to refuse accepting EHS and it shortly after published a "fact sheet" that closely followed the report's recommendations.

 

More information

For more environmental illness history, see:
http://www.eiwellspring.org/history.html.

 

 

2020

 

Sources and references

Abrams, Herbert et al. Letter to Directors-General, World Health Organization, International Labor Office, United Nations Environment Program, and Director of International Program on Chemical Safety, April 17, 1996. (Later published in Archives of Environmental Health.)

 

Ashford, Nicholas and Claudia Miller. Chemical Exposures: Low Levels and High Stakes (second edition), New York: Van Nostrand Reinhold, 1998. Chapter 9.

 

Bailer, Josef et al. Trauma experience in individuals with ideopathic environmental intolerance and individuals with somatoform disorders, Journal of Psychosomatic Research, 63, 657-661, 2007.

 

Baird, R.E. Scientist accused of bias, Colorado Daily (weekend), May 16-18, 1997.

 

CMA. "Environmental illness" briefing paper, Chemical Manufacturers Association, 1990.

 

Carruthers, Garrey and Herman Staudenmayer. Analyze syndrome before making policy (op-ed), Albuquerque Journal, July 6, 1996.

 

Donnay, Albert. "Junk science" meets junk journalism, American Public Health Association annual meeting, November 9-13, 1997.

 

EI Wellspring. Protesters disrupt MCS medical conference, www.eiwellspring.org, 2018.

 

Hardell, Lennart. World Health Organization, radiofrequency radiation and health – a hard nut to crack, International Journal of Oncology, 2017.

 

Hileman, Bette. Multiple chemical sensitivity, Chemical & Engineering News, July 22, 1991.

 

IPCS, Report of Multiple Chemical Sensitivities (MCS) Workshop, Berlin, Germany 21-23 February 1996 (unedited version).

 

IPCS, Conclusions and Recommendations of a Workshop on "Multiple Chemical Sensitivities (MCS)." (Feb 26, 1996 edition).

 

McCampbell, Ann. Chemical sensitivity under siege, Townsend letter for doctors and patients, January 2001.

 

McGarity, Thomas and Wendy Wagner. Bending science: how special interests corrupt public health research, Harvard University Press, 2008.

 

Oxman, Andrew et al. Use of evidence in WHO recommendations, The Lancet, May 9, 2007.

 

Staudenmayer, Herman. Multiple chemical sensitivities or idiopathic environmental intolerances: psychophysiologic foundation of knowledge for a psychogenic explanation, Journal of Allergy and Clinical Immunology 99, 434-437, April 1997.

 

Wilson, John. Gots misrepresents workshop conclusions on internet, Our Toxic Times, May 1996.

 

WHO. WHO workshop on Electrical Hypersensitivity, Working group meeting report, Prague, Czech Republic, October 25-27, 2004.