Multiple Chemical Sensitivity, MCS

2 History, definition, name, and delimitation in relation to other syndromes

2.1 MCS, development history
     2.1.1 Sensitivity in a toxicological context
     2.1.2 Disease, illness, syndrome
2.2 Description of MCS
     2.2.1 MCS symptoms
     2.2.2 MCS definition
     2.2.3 MCS, course
     2.2.4 MCS synonyms
2.3 Delimitation in relation to other syndromes and illnesses
2.4 Comments

2.1 MCS, development history

The allergologist Randolph (1952) was the first to report on a group of patients in the US, who experienced symptoms from chemicals in their daily surroundings, both at work and in their homes. He assumed that their symptoms were caused by a stress reaction due to exposure to organic compounds such as solvents, petrol, perfume, exhaust gasses, etc. Randolph and some of his colleagues published several new cases fitting to the description above.

The authors considered the illness to be a hypersensitivity reaction in accordance with the current broad definition of allergy of the 1950s and 1960s: An "intense" or "over"-reaction in one or more organs to an external stimulus, which in most people does not provoke a reaction. But many physicians and not least practicing allergologists and immunologists rejected this definition. They stuck to the narrower definition of the antigen-antibody-mechanism as (immunological) basis for hypersensitivity illnesses.

As a reaction to this rejection, Randolph, together with some like-minded colleagues, formed a new society for human ecology in 1965. He encouraged physicians of all medical fields to join the society. In 1985 the society became the "American Academy of Environmental Medicine" (AAEM) and its members were called clinical ecologists. The academy now has about 2000 members, 800 of which are oto-rhino-laryngologists. Even though the name of the academy includes concepts, which in Danish can be understood as environmental medicine, clinical ecologists from the US are not the same as Danish specialists in environmental medicine. Nor are environmental illnesses, which are diagnosed as such according to the definition of the AAEM, what Danish physicians regard as environmental illnesses.

In 1992 the academy presented their theory as a holistically oriented illness model for environmental illnesses, to which MCS belongs. According to this theory, many symptoms experienced by hypersensitive people arise from a functional disorder in one or more of the biological systems of the body (AAEM, 1992).

According to the AAEM, MCS has emerged because we are surrounded by an increasing number of potentially hazardous chemicals, which affect more and more people (see also Annex A).

The theories and concepts of the AAEM are described more thoroughly in section 6.6.

During the 1980s more and more accounts of MCS and other conditions and symptoms similar to MCS have emerged. The list of substances, which can elicit health complaints, has also grown considerably (see section 4.7).

Exposure to triggering causes can occur everywhere: In the home, at work, and out-of-doors.

Since 1990, MCS has been discussed increasingly in the US and Canada, among specialists as well as by the general public. The debate has included subjects as: MCS as a recognized illness, how it is defined and what causes it, the mechanism of illness, treatment, and the role of the authorities in relation to MCS. The unsolved problems relating to MCS have become more evident, e.g., through reference to them in the media and because MCS patients and their supporters have sought assistance from the authorities. Several ministries in the US government have been and are still involved in the debate, and they have funded a number of conferences and workshops.

Discussions concerning the ”Gulf War Syndrome”, which in many ways can be compared to MCS, have mobilised much support and many resources from high places in the US administration. In several US states and in some Canadian provinces MCS patients have been given compensation, and so-called ecological environmental health centres, where MCS patients are received and treated, have been established (see chapter 8).

Another historical perspective seems relevant as an introduction to this report. In a review article with many examples from history, Göthe (1995) describes how very different environmental factors for short periods of time have been focal points for new concepts of illness, which have led to epidemic-like spreading.

Table 2.1 Examples of environmental illnesses, historic review from the 19th and 20th centuries (Göthe, 1995)

  • 1830 writer's cramp when the quill was replaced by the steel pen
  • 1850 arsenic poisoning from wallpaper, lamp shades, etc.
  • 1908 telegrapher's cramp when the telegraph was introduced
  • 1920 amalgam – mercury poisoning, continued in 1970 and 1980 (Sweden)
  • 1940 carbon-monoxide poisoning from generator gasses during the Second World War
  • 1970 repetitive strain injury (Australia)
  • 1970 VDU (visual display unit) related and electromagnetic illnesses
  • 1970 illnesses from self-copying paper

Typical of the syndromes mentioned above is the fact that it has not been possible to detect objective functional or organic bodily changes. The symptoms are not specific and they resemble MCS symptoms. Most of the syndromes have disappeared in the course of a few years or decades.

2.1.1 Sensitivity in a toxicological context

Sensitive or sensitised people react more violently to a chemical when exposed to it a second time, than they did when they were exposed to it the first time. They also respond more violently at lower doses, which would not normally bother other people. Sensitivity is based on individual differences in susceptibility, where age, sex, genetic factors, other illnesses, previous exposure, and stress are decisive factors. In Denmark the word “intolerance” can be used instead of sensitivity.

2.1.2 Disease, illness, syndrome

Of the two English categories of sickness, disease (objectively measurable physiological and/or psychogenic change) and illness (a subjective state of discomfort which does not produce objectively measurable symptoms), MCS belongs to the latter. Some use the term syndrome, which is a condition with several subjective symptoms (signs of illness) or discomfort.

2.2 Description of MCS

The description most often used is the following:

"People who were previously well complain of repetitive non-specific symptoms which they ascribe to exposure to chemicals in very low concentrations."

MCS patients complain of good and bad odours. Odours originate from inorganic or organic chemicals.

2.2.1 MCS symptoms

The most frequently reported symptoms are listed in table 2.2.

Table 2.2 List of the most frequently reported MCS symptoms (Ashford & Miller, 1998)

Difficulty in breathing
Pains in the chest
Irritation of mucous membranes in eyes, nose, and throat
Fatigue
Complaints from stomach and intestines
Pains in muscles and joints
Skin complaints
Headache
Dizziness
Difficulty in concentrating
Depression
General indisposition
Poor memory

Symptoms from various organs are shown in the left side of the table, and symptoms from the central nervous system (CNS) in the right side. According to the definition of MCS, all MCS patients have complaints from two or more organs. One of the organs is always the CNS. Many patients also show intolerance to alcohol (Vesterhauge, pers. com. 2001).

The reported MCS symptoms are not specific, that is they occur in connection with many other illnesses or syndromes.

2.2.2 MCS definition

The clinical definition of a disease is usually a combination of what the patient says and what an objective examination by a physician (physical examination) and laboratory analyses reveal. No objective changes are seen in connection with MCS. The definition of MCS is, therefore, solely based on observations made by the patient. They consist of the following criteria:

  1. MCS starts in people who have previously considered themselves to be healthy.
  2. The symptoms occur as a response to exposure to a certain chemical and they disappear, when this chemical is no longer present.
  3. The patient complains of symptoms from more than one organ (two or more).
  4. Symptoms can occur due to exposure to different non-related chemicals, which function via different toxic mechanisms.
  5. It is possible to describe the situations of exposure, which bring about the symptoms.
  6. Exposures, which bring about symptoms, involve very low concentrations; concentrations that are considerably lower than the average concentrations, which elicit health complaints in most people.
  7. Other causes of illness can be excluded.

The bullet points listed above correspond to Cullen's (1987) criteria. These have been accepted by most of the international MCS scientists as the basis of common understanding and for co-ordinating further research.

Comments on the criteria:

According to several scientists, MCS starts after an initial exposure. This exposure can be a chemical exposure or a serious virus infection in an adult or it can be a traumatic event (Interagency, 1998; Graveling, 1999; Ashford & Miller, 1998). Some maintain that a psychogenic trauma can be the initial triggering event. This event is often a posttraumatic distress syndrome, which is a condition with symptoms of many different kinds following a serious accident.

It is important to underline that only few out of a group of people, exposed to the same chemical, develop the chemical sensitivity, which characterises MCS.

2.2.3 MCS, course

The condition lasts for several (more than two) years. Most people are never rid of the symptoms. Some patients experience symptoms daily. Others do so more rarely, perhaps once a week. A few have been found to lose their chemical sensitivity, enabling them once more to tolerate chemical odours in low concentrations.

Many patients react to an increasing number of chemicals and the number of symptoms also increase with time.

2.2.4 MCS synonyms

MCS has been given many names, especially in the English-speaking part of the World (see table 2.3). Most researchers use a name, which expresses their perception of cause, mechanisms or condition (result). The table gives a good representation of the differences and uncertainties in the perception of MCS among all groups dealing with the syndrome.

Table 2.3 Expressions describing conditions similar to Multiple Chemical Sensitivity.
The names are grouped according to cause, mechanism and result in relation to the mechanism of illness (from Ashford & Miller, 1998)

Causal relations
Environmentally related illness
Chemically induced enhanced susceptibility
Chemically acquired immune deficiency syndrome (Chemical AIDS)
The petrochemical problem

Mechanisms
Immune disease
Immunotoxicity
Immune dysfunction
Immune dysregulation
Acquired odour reaction
Mass psychogenic illness
Multiple symptom complex
Toxic agoraphobia
Idiopathic environment tolerance
Multi-organ dysesthesia

Result
Multiple chemical sensitivity (MCS)
MCS syndrome
Chemical hypersensitivity syndrome
Universal allergy
Disease of the 20eth century
Total allergy syndrome
Environmental allergy or disease
Brain allergy
Environmental adaptation/difficulty syndrome
Food and chemical sensitivity
Toxic-induced loss of tolerance ("TILT")
Scent antipathy

The condition has no official Danish name. In occupational medicine the term odour hypersensitivity is used.

A research team at the Copenhagen University Hospital (Rigshospitalet)National Hospital of Denmark has used the term acquired intolerance to organic solvents (Gyntelberg, 1986). In Sweden, the following names are used: multiple chemical hypersensitivity, multiple hypersensitivity, and environmental somatization syndrome (Ørbæk, 1998; Göthe, 1995; Lindelöf, 2000). In Germany MCS is called Chemikalienunverträglichkeit (chemical intolerance) (Maschewsky, 1998).

The American College of Occupational and Environmental Medicine is the forum in the US with most MCS experts. In 1999 it recommended the use of the name "idiopathic environment-related intolerance (IEI)" instead of MCS. The new name corresponds better with the present knowledge or lack of knowledge concerning the condition (ACOEM, 1999). Idiopathic implies that the cause of the illness is unknown. This is a better and more appropriate name.

During the last couple of years several scientists have adopted IEI or a similar name: idiopathic environmental illness (IEI). This is the most neutral name to date, which, however, can lead to confusion with other environmental illnesses (Sparks, 2000). MCS is used in this report because it is still the name most commonly used in the literature.

2.3 Delimitation in relation to other syndromes and illnesses

MCS is grouped among the so-called environmental illnesses. These include several syndromes presumably caused by stress factors in the environment, but which are not officially recognized as diseases. The term MCS is often used for different environmental illnesses. See the list of environmental illnesses in table 2.4.

Table 2.4 List of environmental illnesses somewhat similar to MCS

Fibromyalgia
Chronic fatigue syndrome (Myalgic encephalomyelitis)
Amalgam illness
Hypersentivity to electricity
Food intolerance (FI)
Sick Building Syndrome (SBS)
Gulf War Syndrome (GWS)


Many people complain of the same symptoms as in MCS, while the physicians cannot detect objective signs of illness. Unlike MCS, the other environmental illnesses are not caused by exposure to chemicals but possibly by other mechanisms.

MCS is distinguished from the other illnesses by the criteria defining MCS (see subsection 2.2.2). People fulfilling the criteria defining MCS must be considered as MCS patients, even if they also fulfil criteria defining other syndromes. A number of investigations show that some people fulfil the criteria defining several syndromes. Many people with SBS or GWS (see table 2.4) also fulfil the criteria defining MCS (see chapter 4).

The most important environmental illnesses, which can be distinguished from MCS, are described briefly below.

Chronic fatigue syndrome (CFS) and Fibromyalgia (FM)

These syndromes, which are also poorly defined due to lack of detectable objective changes, are not officially recognized. They resemble MCS in several ways. 40-to-50-year-old women with a long school education are over-represented among patients with these three syndromes (Buchwald, 1994). The odours, which elicit health complaints in 87-97% of the MCS patients, also elicit symptoms in 53-67% of the patients with chronic fatigue syndrome and in 47-67% of the patients with fibromyalgia. On the other hand, 75% of the MCS patients complain of pain in muscles and joints, which is typical of patients with fibromyalgia. There is every indication that these three illnesses are closely related. Some experts consider them to be one and the same.

Sick-building syndrome (SBS)

This syndrome covers a long line of conditions with different definitions of illness. According to the WHO, the main symptoms of SBS have to do with mucous membranes and the central nervous system, with or without relation to odours. Many SBS patients complain of symptoms, while few MCS patients do.

As opposed to MCS patients, SBS patients have no symptoms when they have left the building and are home or elsewhere.

Some SBS patients develop MCS. These are described in chapter 4.

Amalgam illness

In occupational medicine, poisoning from small doses of mercury has been recognized as a toxicologically based illness called ”micro-mercurialism”. Some of its symptoms are similar to those of MCS.

According to a theory from the AAEM, the mechanism behind amalgam illness is that a daily release of a small dose of mercury from amalgam tooth fillings can produce a condition similar to MCS. But numerous clinical investigations and experiments, especially in Sweden, do not confirm this theory (Stenman, 1997). Out of a number of persons, who were of the impression that their symptoms originated from amalgam tooth fillings, another illness was found to be the cause in 30% of the cases. These persons no longer had symptoms, when they were cured of the other illness (Langworth, 1997). An investigation in Finland has shown that among people with amalgam tooth fillings, a small number have a high concentration of mercury in their urine. In 4 out of 26 persons with amalgam fillings, all of which had a high content of mercury in their urine and symptoms of mercury poisoning, all symptoms disappeared with the removal of the fillings (Stenman, 1997). The Author is of the opinion that it has to do with a regular toxicological mechanism of illness.

Hypersensitivity to electricity

This environmentally based syndrome is of widespread occurrence in Sweden. Patients complain of symptoms when they are close to electrical appliances and installations. The symptoms resemble those of MCS. The mechanism is explained as electromagnetic fields affecting the bodily functions (Viby, 2001).

Many people in Sweden have been tested for hypersensitivity to electricity in clinics for occupational medicine, but no connection has been found between the alleged symptoms and electromagnetic energy. Since hypersensitivity to electricity has nothing to do with exposure to chemicals, this syndrome does not comply with the definition of MCS adopted in this report.

Food intolerance (FI)

Many physicians and scientist consider FI to be an illness component of MCS (Eaton, 2000; Rea, 1992). People with FI have experienced a chemical poisoning and later develop MCS-like symptoms when they eat certain foods. The mechanism is triggered from the gastrointestinal tract and is, therefore, not in accordance with the definition of MCS (Eaton, 2000).

A small group of people with FI have, however, developed odour hypersensitivity with MCS symptoms.

The mechanism behind FI is unknown and the syndrome is not recognized as a disease.

Porphyria

Some MCS patients have symptoms that are similar to those found in patients with porphyria, which is a metabolic disorder affecting several organs: The skin, the nervous system, synthesizing of haemoglobin. Typical symptoms are dark urine, stomach cramps, and sun-rash. Specialists cannot find any connection between the two pathological pictures. The situation is that the same person is afflicted with two illnesses at the same time (Ziem, 1995).

It is striking that many porphyria patients also have MCS. But so far, no illness mechanism has been found in porphyria patients, which can explain the mechanism of MCS.

2.4 Comments

MCS is a syndrome with subjective non-specific symptoms, unclear underlying mechanisms, and many different names. MCS belongs to the so-called environmental illnesses, among which are other poorly defined syndromes with unknown causes and with symptoms resembling those of MCS. It is easy to get them mixed up or to take one for the other.

This report focuses entirely on MCS.

 



Version 1.0 March 2005, © Danish Environmental Protection Agency