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Monday, July 21, 2008

What, ME? Worry!

This is the second in the series of medically themed posts that I will be venturing. This time, instead of focusing on a bogus intervention, I'll be looking at what is largely a bogus diagnosis: Myalgic Encephalomyelitis AKA Chronic Fatigue Syndrome.

Before I begin, I want to remind you that I am not a qualified physician. I'm just a blogger with an interest in science and a fairly good baloney-detector. My comments here should not be taken as medical advice, but rather as something to think about. If you have any questions about this, please consult your doctor. And by "doctor", I mean your MD, not your Homeopath, Accupuncturist, Dietician or Reflexologist.

Myalgic Encephalomyelitis (ME) is a poorly understood disorder that makes life pretty difficult for a great many people. As the alternate name 'Chronic Fatigue Syndrome' suggests, it manifests itself in the form of severe and ongoing tiredness, often associated with some sort of mild respiratory distress.

You're probably thinking "Hey, I'm tired all the time, and I had that cough the other day... maybe I have ME!"
And this is exactly the problem.

These symptoms are so common that many physicians call them "symptoms of life". In other words, they are states that everyone experiences from time to time as a simple result of possessing a human body. This is what makes ME so difficult to diagnose. But it's the very vagueness of the symptoms that makes it easy to misdiagnose. And anyone who has only a passing familiarity with the condition can easily mistake a slight cold, bronchitis or even depression for ME.

Enter the quacks.

Because the symptoms of ME are so common amongst other lesser pathologies (or no pathology at all), CAM practitioners (Complimentary and Alternative Medicine practitioners - also known as "quacks") have a perfect opportunity to move in and exploit a fancy-sounding term. Quacks like words with lots of syllables: they scare customers (note, I said "customers", not "patients") into spending money on all manner of quack remedies in order to clear that horrible word from their psyches.

How does this happen?

Let's say Jane Doe is feeling really tired. She feels exhausted most of the time, and often has coughs or sniffles. Her friend, who once had similar symptoms, tells Jane that she may have ME, and recommends her favourite quack. Jane visits the quack, and after waving his magic stick around, he tells her that she does indeed have ME. He gives her some magic water, pricks her with magic pins or tells her to change her diet unnecessarily and sends her on her way. A week later she feels much better.

So what happened?

What I didn't tell you at first is that Jane is in her mid thirties, has three children and runs her own business. Her daily stress-levels are pretty high, and it's been years since she's gotten a good night's sleep. The reason Jane was tired all the time was not because she had anything physically wrong with her, she was simply a victim of the stressful society she lived in. She was tired all the time because she was tired all the time! Coughs and sniffles happen to everyone.

When she received her magic intervention, she believed she was receiving good treatment for an actual physical problem. Once she believed the physical problem was fixed, there was no more need for the symptoms, and she expected to start feeling better, Because she expected it, she started feeling better. Thus she was miraculously cured of a condition she never actually had.

So what's the harm?

In our example, Jane Doe was having a hard time of life. She saw a service provider who sold her a product that made her feel better. She was "cured". So what if the quack used some fancy words and bogus treatments? The end justifies the means, doesn't it? Well yes, in cases like Jane's it probably does. And that's fine. The problem is that not every case is like Jane's.

What about Jack who is suffering from depression? He feels tired and ill all the time because he's depressed, but he lacks the ability to self-diagnose. So he hears a buzz-word and seeks treatment for a condition that isn't the one he's suffering from. The placebo affect alone might be enough to get him over his depression, but what if it doesn't work? Jack is likely to fall even deeper into depression because he has an apparently incurable disease.

Or what about Stacy who is suffering from something even more dangerous like Insulin Resistance? Stacy feels tired and ill most of the time, receives a quack treatment for ME and convinces herself to feel better. In the mean-time, Stacy's undiagnosed and untreated Insulin Resistance turns into full-blown Diabetes and Stacy's life is changed forever. If Stacy had visited a real doctor instead of an Electrodiagnostician, she may have been able to treat the Insulin Resistance before it became a problem. But she spent unnecessary time and money on useless nonsense interventions, and fell victim to the fraudulent marketing messages of quackery.

And there's another class of victims here: the few people who are genuinely suffering from ME. What if such a person were to visit a quack, who honestly (albeit incorrectly) believes that he can treat their condition. They pay over heaps of money for bogus therapy that does nothing for their condition. Such a person, who, under the influence of such a debilitating condition, would find it difficult to earn a living, and would therefore be at the mercy of whichever ineffective practitioner they selected to help them with their problem.

Conclusion

ME is one of a number of actual pathologies that have come into fashion with the quack movement. The quacks latch onto the current fad diagnosis and ride it for all it's worth, until the public becomes too well informed, Oprah's producers decide it's not helping their ratings anymore, and the next fad begins.

The positive feedback loop part of the cycle is currently in full effect for ME. Hopefully in the coming months, real information about the nature of this illness will start to become more widely known, and quacks will have to find a different fancy word to hang their hats on. When that happens, we'll be waiting to expose that one too.

5 comments:

  1. Doctors do not diagnose a patient with ME/CFS until at LEAST 6 months into having severly debilitating symptoms. I was ill for a year and a half before my doctor diagnosed me because he did every blood test on the planet to figure out what was wrong. This is not a process any person would care to go through, it is painful, emotionally and physically, and is extremely taxing on energy and money. A patient never goes in for one or two check ups and then gets diagnosed with ME/CFS, it is a very long process.

    This is not just exhaustion, this is debilitating aches ... it is like having the bad end of Mono every day for years at a time. To make light of this illness is extremeley enfuriating, and we have to deal enough with people misunderstanding the disease every day, including doctors.

    The link is not to respiratory symptoms, but to the nervous system. ME literally means inflamation of the brain stem. It is a virus of the spinal cord and brain stem. We have too many cytokine cells which means that our bodies generate flu symptoms every day... the communication between our nervous system and our immune system is on overdrive, so even though we don't have a bug, our body creates a fever, sore throat, stomach ache, and exhaustion that makes it very difficult to go about our day.

    By the way, anyone trying acupuncture or herbal remedies is just doing everything in their power to get some relief. If you were in pain every single day and unable to lead your normal life, I think you would do anything in your power to get well, too.

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  2. "The link is not to respiratory symptoms, but to the nervous system"

    Yes, thank you for pointing that out. What I should have clarified in my original post is that the respiratory symptoms tend to precede the onset of the ME symptoms, but not in all cases.

    "By the way, anyone trying acupuncture or herbal remedies is just doing everything in their power to get some relief. If you were in pain every single day and unable to lead your normal life, I think you would do anything in your power to get well, too."

    Yes, I can certainly understand the desperation an ME sufferer might experience. If I were in that situation, I might be tempted to try and hedge my bets by trying anything I could to find some relief.

    I'm not blaming any ME sufferer for this desire. I am blaming the fraudulent quacks who prey on the sick and desperate by selling them snake oil.

    I am also blaming the fraudulent quacks who dilute the public perception of this real and debilitating disease by telling every second person who walks through their door that they have ME.

    The quacks in this equation are hurting the real ME sufferers in a double-whammy.

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  3. Excellent blog entry, Owen – well up to your uniformly first-rate standard!

    In an earlier entry titled “Electrodiagnosis,” you wrote that you couldn’t establish what “SCIO” stood for. I gave a partial answer in a comment since I also wasn’t able to get the proverbial “full Monty” at the time. Well, all of that’s changed:

    SCIO stands for Scientific Consciousness Interface Operation system.

    Read more about this stunningly elaborate scam, its ill-informed proponents and its easy but ill-advised incursions using ignorance-bombs into the terrain of the quantum physicist here.

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  4. Ah! Now it makes sense! Thanks for the update, Con-Tester.

    As I should have predicted: four multisyllabic words which, when strung together, mean essentially nothing, but still sound very impressive.

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