Science

This article is mostly about Chronic Lyme – yet it describes a more general set of “Medically Unexplained Symdromes” (MUS) and discusses some of the implications of these problems. Well worth a reading in full.

http://www.ehponline.org/members/2002/suppl-4/607-611sigal/sigal-full.html

”
In the final analysis there is a struggle over
who defines a new and emerging disease:
patients, their chosen clinicians and advocacy
groups, or the biomedical establishment’s
physicians and scientists. It is clear that the
scientific community faces a formidable challenge.
Unexplained suffering and fear of the
unknown are far greater than fear of even the
worst, incurable disease and drive these
patients to extreme measures. Dealing with
the phenomenon of chronic Lyme disease, a
new constituent of the MUS syndromes complex,
requires an appreciation of its complex
psychopathogenesis. We need to appreciate
and study the aporology of MUS conditions—
to describe and heal the sense of being lost,
hopeless, and vulnerable”

Okay, so you are ill. You have bad skin, you feel tired, you can’t think very well, you itch, you find fibers on your skin, and doctors don’t take you seriously.

There are a number of diagnoses that might cover many of your symptoms. But let’s assume for now you have a novel infectious disease which we shall call “Morgellons”.

Now, how do we know this is a disease?

Let’s consider another diagnosis – one that many people feel is related – “Chronic Lyme“. Many people seek out a diagnosis of Chronic Lyme, thinking this diagnosis with allow them to deal with their problems. People even report great happiness when they are finally, after much effort, are diagnosed with Chronic Lyme. Believers congratulate one another. Typical quotes from the previous link:

• “I feel vindicated”
• “It’s a milestone to be diagnosed with Lyme disease”
• “Congratulations”
• “congratulations on getting a diagnosis ! what great good news ..bad news “
• “Getting the Lyme dx, I was elated, happy to finally know what I had..”

These people are HAPPY that they have Lyme. Finally they can put a finger on the cause of their fatigue. What’s the problem here? There is not much evidence to support the concept of late stage Chronic Lyme – studies show people who have had Lyme do not get sicker than people who have not.

Sure, these people are sick – but lots of people get sick, lots of people have chronic symptoms of eczema and fatigue for no known reason. The difference here is that some people are so desperate for a diagnosis, that they either diagnose themselves, or they seek out a doctor who will give them the diagnosis they seek.

The people who choose Chronic Lyme to explain their symptoms are fortunate in that they choose a real disease, that might actually occur in chronic form. It’s also fairly new, so the literature is still in flux. The fact that the CDC and AMA downplay the incidence of Chronic Lyme does not dissuade them, they have choosen Chronic Lyme, they seek out a friendly doctor, and they start happily “treating” their disease.

People who choose Morgellons are less fortunate. Morgellons is not based on a real disease, so they have to claim it’s an unidentified infectious agent. They still want the joy of validation, they seek a diagnosis. Unfortunately there are no friendly doctors. They are reduced to diagnosing themselves, and forming support groups to diagnose each other, and pescribing each other treatments, to validate and reinforce their own belief.

Statistics do not Chronic Lyme is not the epidemic some people claim it to be, it is probably a mistaken diagnosis in a large part of the group that claims to have it. They are simply unhealthy, as many people are, particularly in America.

Similarly, Morgellons is just a collection of chronic symptoms that are typical of a percentage of the demographic that reports those symptoms. You are not the carrier of some novel infectious agent, you are simply getting old. Seeking a diagnosis of some exotic disease is a very seductive idea. Unfortunately, in all likelihood, you are simply getting a bit older, and are in poor health – in part due to stress, bad diet and lack of exercise.

The seductive diversion of “Morgellons” is an illusion. It is wasting your time, and the “treatments” are probably making you sicker.

People professing “Morgellons” are usually middle aged white women.

Why could this be?

I wonder if some tiny fraction of Morgellons sufferers are simply people who have fading eyesight, and simply do not realize this.

The “fibers” that are claimed are often very small. Such as the vellus hairs on the back of your hand. They are mostly invisible to the naked eye, but can become visible when lotion is applied, or when lighting conditions change, or when viewed at a different angle. This sudden appearance might make it seem like the hairs are “shooting” out of your skin. The hairs were not there, then they were – at least to your eyes.

This phenomenon might in turn be magnified by poor eyesight, which usually takes a turn for the worse after the age of 35.

Women also tend to use a lot more lotion, which both attracts fibers, and contributes to the sudden “appearance” of hairs (both vellus and terminal) when the lotion is applied.

I’m not saying this explains every case. But it might explain some. You need to eliminate such possibilities before moving on to others.

How good are your eyes? Check here:

http://www.preventblindness.org/eye_tests/near_vision_test.html

In the book “The Chain of Chance”, by Stanislaw Lem, a detective is investigating a series of mysterious deaths occuring to foreign businessmen at a seaside spa. If you’d like to read the book, then don’t read this article, as they share many of the same themes.

Consider a magic trick – a performer is in a fairly large theater, it holds 2000 people. He asks them all to take out a coin and flip it. He then asks all the people for who the coin comes up heads to flip it again. This repeats, and more and more people are eliminated. Eventually after ten tosses, only one person remains – the magician calls this person to the stage, the winner.

Now consider this from the point of view of the person who “wins”. They flip the coin, it comes up heads – they flip it again and again, it keeps coming up heads! Something must be going on? From their perspective, the continual heads is very surprising.

But it had to happen to someone.

Consider now, that 5% of the US population have some form of Eczema. That’s about 15 million people (out of a total US population of 300 million)

Consider furthur, that 2.2 million Americans have Obsessive-Compulsive disorder, that’s about 0.73% of the population.

Now, assuming an even spread, then of our 15 million people who have eczema, then 0.73% of them will have both eczema and OCD. That’s 110,000 people.

The numbers get larger if we consider the number of americans who have a Major Depressive Disorder. That’s 9.5% of our 15 million, or 1,425,000 people who have Eczema and a Major depressive disorder.

So out of those, who also has Fibromyalgia? Well, the prevelence of Fibromyalgia is 1.36%, so out of the people who have a major depressive disorder, and Eczema, then 19,380 also have Fibromyalgia.

So that means nearly 20,000 people will have the combined symptoms of:
– Eczema
– A Major Depressive Disorder
– Fibromyalgia.

That means they will have
– Intense itching
– Rash
– Lesions
– Major Depression
– Abnormally irritable mood
– Fatigue
– Brain fog
– And several other symptoms.

Some of these 20,000 people meet one-another and compare symptoms. They find they have the same symptoms. They figure they have the same disease. They call it Barstow Syndrome after the town it was first discovered in. They form a support group, they start a web site, more people find out about it, everyone thinks it’s a real disease. They start to speculate as to the cause of the disease.

But there is no Barstow Syndrome – they are simply the 20,000 people who were unlucky enough to get combined Eczema, Major depression and Fibromialgia all at the same time. From their point of view this is very unlikely. But right now, 20,000 people HAVE all three problems. It’s just simple statistics. It’s unfortunate for them, but it’s nothing special.

The Barstow Syndrome Research Institute dislikes this analysis. How likely is it, they ask, that all these people, thousands and thousands, all have the exact same symptoms? Well, as we just saw, it’s not only likely, it’s inevitable. Like the guy who tosses heads ten times in a row – it just had to happen to someone. It HAD to happen to 20,000 people.