Song for Jasmine

Donna Robertson becomes ill when she is exposed to perfumes, aftershaves, air freshener, fabric conditioner and furniture polish. She has been diagnosed as allergic to perfumes and chemical cleaners. Her allergies are so severe that her entire lifestyle has been changed to accomodate them.

Donna actually believes she has Multiple Chemical Sensitivity (MCS). This is a particularly severe form of allergy where the person shows an allergic or asthmatic reaction to a wide variety of substances, instead of just a few. The trouble is, many doctors do not believe MCS exists, and the medical profession will not help her. To quote Donna:

Donna isn’t the only person in the world with MCS. In “A letter to Senator Dianne Feinstein”, Patricia Rattray describes her own experiences, and describes the attitude and response she encounters from people:

MCS has been known since the 1940s-1950s, though the first description of it is actually attributed to Edgar Allen Poe in “The Fall of the House of Usher”, in 1839.

MCS is very similar to allergy and asthma in many ways, differing more in degree and in the number of substances that provoke the reaction than anything else. Why is it, then, that some people don’t believe MCS exists?

The typical response of people who express such disbelief contains two aspects:

1. MCS is psychological, the person is imagining it or is somehow expressing some phsychological need through their belief in their illness
2. MCS is poorly defined in medical terms, and is not recognised as a proper medical condition with clear diagnostic guidelines

Often, the second argument is used to ‘prove’ the first: “your doctor doesn’t believe in it so you must be imagining it”. Those sound like powerful arguments, but before we accept them, we should look a the history of a few other conditions. These same arguments have been used before, many times, for many other conditions. Often, they have not withstood the scrutiny of scientific research.

In the 1930′s – 1950′s, there were seven medical conditions known as the ‘holy seven’ psychosomatic illnesses. In other words, the medical establishment thought they were all in the mind of the person who claimed to be sufferring from them. The holy seven are: asthma, rheumatoid arthritis, ulcerative colitis, essential hypertension, neurodermatitis, thyrotoxicosis and peptic ulcer

I’d never heard of some of them, but if you follow the links to wikipedia you’ll find that most are now on a solid footing as well-understood conditions with known causes. None are now considered to be in the patients’ imagination.

It’s hard to believe that the medical profession once believed that asthma was a mental condition, not physical. People can die of asthmatic attacks, if it’s all in their mind that shows one heck of an imagination!

As for rheumatoid arthritis, I challenge anyone to tell their grandmother that she is imagining that.

Peptic ulcers are often caused by Helicobacter pylori. This was first found in the human stomach in 1875, but the results were forgotten, because the bacterium couldn’t be cultured in the lab. It was finally proven to cause ulcers when the scientist researching it, Barry Marshall, drank a beaker of it to prove his point, early in the 1980′s. He became ill as a result, and the link was proven. Apparently, they didn’t think he was imagining it then, maybe he lacks imagination?

So much for the first argument. What about the medical definition and diagnosis of MCS? In 1996, the Environmental Protection Agency said:

We shouldn’t read too much into that, lack of concensus often means that there is not enough clear evidence, not that the evidence that exists is wrong.

While there is no clear understanding of the causes of MCS, there are some clear definitions. The National Institute of Environmental Health Sciences defines MCS as a

In 1989, they defined 6 criteria for justifying a diagnosis of MCS (which they called ‘Idiopathic Environmental Intolerance’):

1. Symptoms are reproducible with repeated (chemical) exposures.
2. The condition is chronic.
3. Low levels of exposure (lower than previously or commonly tolerated) result in manifestations of the syndrome (i.e. increased sensitivity).
4. The symptoms improve, or resolve completely, when the triggering chemicals are removed.
5. Responses often occur to multiple chemically-unrelated substances.
6. Symptoms involve multiple-organ symptoms (runny nose, itchy eyes, headache, scratchy throat, ear ache, scalp pain, mental confusion or sleepiness, palpitations of the heart, upset stomach, nausea and/or diarrhea, abdominal cramping, aching joints).

I’d say that was a fairly clear definition, so who agrees?

The MCS Referral & Resources site has a list of organisations that recognise MCS as a real condition, which includes 25 US Federal Government Agencies, Commissions, Institutes & Departments. These include the US Congress, the EPA, American Lung Association, the American Medical Association, the Department of Justice, The Forest Service of the Department of Agriculture, the Department of Education, and even the US Army Medical Evaluation Board. Clearly not all of these agencies have a vested interest in promoting MCS awareness, and would not do so unless they thought it was real.

Among those who do not acknowledge the existance of MCS, the Environmental Sensitivities Research Institute might seem like a surprising entry, until you find out that its board of directors includes representatives of Monsanto, Proctor and Gamble, and the Cosmetic, Toiletry and Fragrance Association. Clearly, they would not want it acknowledged that their products can make people sick.

So, on the one hand we have a history of medical conditions that were thought to be all in the mind of the patient, which the medical establishment finally finds a real physical basis for, sometimes taking decades. Blaming someone else’s imagination for your own lack of understanding seems to be normal.

On the other hand, we have increasing acceptance of the existance of MCS across many parts of the US government, including agencies which have nothing to gain from acknowledging it (apart from healthier people, I guess). These people are taking decisions that will cost them money to implement because they believe MCS is real.

Donna Robertson, I believe you.