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.

No related posts.

Dr.Rapp is a board certified environmental medical specialist and pediatric allergist. She told the audience two things that went against the mainstream medical opinion of the time, and in fact are still not as widely recognised as they should be.

• Allergies can cause changes in behaviour. These can often be severe and uncontrollable, and frequently go unrecognised or are misdiagnosed as psychological problems.
• People can be allergic to a wide variety of things, more than just the usual suspects. Many of the people she examines have been told by doctors that they could not possibly be allergic to things that they have begun to suspect for themselves, only to find that they were right.

The entire TV show is available on YouTube, and I can recommend it to anyone who has 45 minutes spare to watch it. For those of you that don’t, here are some of the highlights I have extracted for you. I should add that I have no medical background, and everything I report here is from watching the video for myself.

The first clip shows Ned. He’s allergic to tomato, milk, and natural gas. He was misdiagnosed as having Tourette’s syndrome, because his allergies cause him to become extremely violent. In this extract you can hear him say that he knows he is being violent but that he can’t help himself.

Jonathon (not shown here) is allergic to tree pollen. He became violent when he went outside to play. He’s also allergic to many processed foods and bananas. Even the smell of bananas provokes a strong reaction from him.

Alicia was classified as a difficult child, with manipulative behaviour and temper tantrums. She becomes giddy and giggly when she eats peas. She also reacts to detergents on peoples clothing, sometimes reacting to someone simply as they walk by.

Marsha spent 57 days in hospital at $750 per day, but was not correctly diagnosed. She becomes sad and withdrawn when she comes into contact with flouride, such as we find in toothpaste and tap water. After she was correctly diagnosed and treated, her IQ went from 56 to 128. Quite a difference.

Daryl became angry and sad and hid under the table when exposed to the air in his school after construction work took place. His pulse was 120 when he sat in the class, but only 100 when he was running around in the playground outside. His IQ rose 19 points when an air purifier was put in the room with him.

Another boy, Brian, became so violent that his family had to move. He is allergic to milk, peanuts, wheat, soy, and corn. Like most of the children on this show, he is also allergic to sugar.

Dr.Rapp proposes a simple way for you to investigate for yourself if you suspect that someone you know has allergies or sensitivities.

• Have the person write something, draw something, or describe how they feel
• Have them eat something
• 20 minutes later, have them write, draw, or describe their feelings again

You can also try this in different rooms in your home, at school, indoors and outdoors, to see if the environment is a factor.

If you suspect a food allergy you can schedule certain foods to be off the menu for 4 days, then back on, and see what changes when you do that. By trial and error, you may be able to identify a source of problems. As Dr.Rapp says, when you see a sudden change in behaviour, mood, or responsiveness, think about what the person ate, smelled, or touched.

One more thing she emphasised on that show. If your doctor tells you that it’s impossible to be allergic to something, they’re probably wrong.

(Possibly) related posts:

1. Welcome to Song for Jasmine
2. Why don’t people believe MCS exists?
3. An hour, a day, a week, for the earth
4. March diary
5. (British) Farmers fear EU pesticide rules

Jasmine, with a piece of fennel

Jasmine is an African Grey parrot. That’s her flying through the banner, here in the kitchen, and elsewhere on this site. She came to live with us in April 2007, and just 18 short months later we had to have her put down. She had such severe allergies to the chemicals and products that people use everyday that she wasn’t able to survive. She should have outlived me, but she wasn’t even three years old. She would have been three this month, November 2008.

I have become increasingly concerned in recent years about pollution, climate change, and the ways in which we are poisoning our world. African Greys are an endangered species, on the CITES lists, and for Jasmine to succumb to allergies induced by modern western life is as ironic as it is tragic.

Jasmine’s story has been told elsewhere, on the Dweezeljazz and Chipper’s Alley blogs. With this blog I hope to share some of the things that I find beautiful about the world and to raise awareness (my own included) about the ways in which we can help to preserve it.

I am English in origin, but have lived in France for many years now. I intend to build this site in both languages in parallel, and hope the native French-speakers among you will forgive me my mistakes.

(Possibly) related posts:

1. Earth Day 2009, it’s here!
2. High-rise House Martins
3. HR 669, A Threat to Your Pet
4. An hour, a day, a week, for the earth
5. (British) Farmers fear EU pesticide rules