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The Disease With No Name

Medicine can be tricky. Patients never present with the perfect cluster of disease-defining symptoms. As a patient, waiting for a diagnosis can be frustrating and fraught with anxiety. If you do not have a standard presentation of the symptoms, or the symptoms are so varied that they overlap with many other disease conditions, it is difficult to characterize an illness as a specific disease.
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Medicine can be tricky. Patients never present with the perfect cluster of disease-defining symptoms and when they do, it is so rare that you begin to think that they just read a textbook or Googled "heart attack" to fool you. As a patient, waiting for a diagnosis can be frustrating and fraught with anxiety. For illnesses that are vague, or diseases that are rare, sometimes the patient will go through several different diagnoses, each one getting more obscure and requiring a different specialist before the Docs hit the spot. Some patients never even get a diagnosis, and while the condescending statement "it's all in your head" is rarely uttered by any health professionals anymore, it is a billboard-sized message that is unavoidable to the patient. It is into these gaps of diagnosis that alternative medicine squeezes itself, and it is not too surprising.

Electromagnetic hypersensitivity, or EHS, was in the news again in the past couple of weeks. The Toronto Star ran a story about a woman who is plagued by quite debilitating symptoms, including nausea, dizzy spells, and short term memory loss. Veronica Ciandre, the focus of the article, is also a spokesperson for Citizens for Safe Technology, a grass roots organization that is trying to convince various governments to limit exposure to radio frequencies, with wireless transmission from cell phones, cell phone towers, and wireless Internet hubs at the top of the list. She was also the focus of a CBC Sunday Edition program back in 2011. This would be a noble cause, if indeed the cause was the cause they thought it was, so a little history is in order.

Back in 1996, a World Health Organisation panel convened to discuss a condition that at that time was called Multiple Chemical Sensitivity (MCS), which had similar vague symptoms to EHS but the cause of which was unknown, other than some sort of common environmental exposure that was not normally hurtful to humans. No definitive environmental cause could be demonstrated to explain the appearance of such symptoms, and the panel decided to change the name of the condition, which was characterised by symptoms like headaches, difficulty concentrating, joint and muscle pain, and dizziness and nausea, with the more general term "Idiopathic Environmental Intolerance (IEI)." Idiopathic just means "unknown cause" and the name was chosen to both acknowledge the syndrome without supposing a cause for the condition. It is important to note that this is not a diagnosis of a disease, which is where things get sticky.

In 2004 the WHO convened again in Prague to discuss EHS and sort through what was known of the phenomenon then. Given the similar symptoms to MCS, and the lack of a linkbetween electromagnetic fields (EMF) and the illness, the panel decided to call it "Idiopathic Environmental Intolerance" as well, but this time "attributed to EMF." What is even more curious is that symptoms varied depending on the country, with skin conditions being more of a problem in Scandinavian countries but less so in England. This suggests that there are cultural cues at play here in the illness, so much so that they panel decided that epidemiological studies, which study a disease in a population, rather than in individuals, were not helpful because the illness was so variable country to country that defining it is very difficult.

This brings us back to how we define a disease. An illness is just a cluster of subjective symptoms, and since the rise of the practice of medicine, labels that we call "disease" have been applied to various illnesses in an attempt define a typical presentation of the illness and link it to a possible cause. These disease labels have shifted over time, with illnesses redefined as we discovered the chemical underpinnings of life. The germ theory led some doctors to be convinced that microbes caused all disease, and with the discovery of genes and chromosomes, genetic disorders reigned as the supreme cause. Now, most diseases have a biochemical explanation of some sort with a variety of root causes. If you do not have a standard presentation of the symptoms, or the symptoms are so varied that they overlap with many other disease conditions, it is difficult to characterise an illness as a specific disease: this is the problem with IEI-EMF.

The most striking point made in the 2004 report by the WHO is a warning to practitioners not to diagnose somebody with EHS. It is not a recognized diagnosis and only a convenient label for the illness. There are many other diseases that have symptoms of IEI-EHS; Ciandre's nausea, dizziness for days on end, and ringing in the ears is also characteristic of Meniere's disease, for example. This has not stopped grass roots patient's groups in continuing to fight for a diagnosis of EHS, and this is illustrative of the challenge that medical practitioners have faced since Hippocrates' time in 400 BCE: people want to know why they feel the way they do. The receipt of a diagnosis gives a person not only a reason to pin their illness on, but to also make a guess on what is going to happen in the future: to get a prognosis. This cultural dance, illness to disease to prognosis, is such a compelling need in humans that we will continue to search for the answers we want, even applying fantastical frameworks like that found in most alternative medical paradigms in the absence of a biochemical reason for our illness.

This is the essential problem when we continue to promote a diagnosis without evidence to back it up. When we close our minds to the possibility that we may not be able to find out the root cause, or that science-based medicine is incapable of discerning the cause, and we leave ourselves susceptible to the follies of fantasy based medicine: alternative pathology, physiology, chemistry and even physics, twisted to create an answer, any answer, to why we suffer. For many people, having a wrong answer is better than having any answer at all. It is also important to note that in order to get treatment, or more importantly treatment paid for by the government or insurer, a diagnosis is necessary (an entire other discussion, alas).

EHS has not been shown to be caused by a hypersensitivity to EMF or any other stimulus. EMF has not been able to reliably provoke a reaction when the person is blind to the stimulus, little evidence of a plausible reproducible mechanism has been proposed for the effect at the power level of cell phones or WiFi emitters, and the symptoms, though real, could easily be part of many other syndromes ranging from mild anxiety disorders to serious heart or neurological problems.

As long patient's groups and fringe researchers continue to claim that EHS is an actual disease and not the manifestation of the desire for an answer to explain idiopathic or difficult to characterize symptoms, patients will be alienated from the medical establishment. Doctors and patients will continue to be frustrated with each other, and those suffering from IEI will be driven into the arms of those practitioners and salespersons offering fantasies instead of facts. More importantly, those suffering from IEI-EHS will not get the care they need to get better, and a relief from suffering will remain an empty promise.