Tuesday, November 5, 2013

The ME/CFS Zoo Hypothesis

A constant question regarding ME/CFS (and fibromyalgia) goes something like this:
    Is it one disease, or is it a "spectrum", or is it multiple (distinct) diseases that look the same?
I that regard: I find the "Blind men and an elephant" parable helpful – and would like to expand it.

First of all, let me recount from the Wikipedia page a slightly modified summary of the parable:
In various versions of the tale, a group of blind men touch an elephant to learn what it is like. Each blind men feels a different part, but only one part, such as the trunk, or an foot, or the tusk.
A Jain version of the story says that six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant's body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.
Afterwards the blind men talk to each other and learn that they are in complete disagreement. Some of the stories differ in how violent the conflict becomes, and how (or if) the conflict among the men and their perspectives is resolved.

In some versions, they stop talking, start listening and collaborate to "see" the full elephant. When a sighted man walks by and sees the entire elephant all at once, they also learn they are blind. While one's subjective experience is true, it may not be the totality of truth.
My impression is that many in the ME/CFS "community" think that most of the studies are equally "true" – I think that is the first mistake. To stay in the parable: Some of the blind men have never touched an elephant (or any other animal, for that matter) and simply make things up. Here you have blind men who describe not an elephant, but maybe an park bench, or an found umbrella, or maybe an object that exists only in their fantasy (and even describing that they suck). Yes Virginia, I'm talking about Lombardi, Mikovits and Ruscetti. There are others. Like those blind men trying to describe the color of the elephant. Somehow, now I have to think of the names Meirleir, Maes and Gerwyn.

And even if you sieve out all the blind men describing inanimate objects (or worse, make-believe objects), you get some who grabbed some random animal in the zoo and tried to described it. Now if they can describe two (or more) of those animals, and the differences between them, and if they do not try to make you believe that they describe the whole animal, I think they are much more trustworthy than those who want to make you believe they describe only an elephant, and that they know the entire elephant.

If you have someone who says "Here I found two animals with distinctly different tusk, one has leather like skin, the others is furry", well then we are on to something. Currently I have seen few people who would fit that bill: Alan Light (et al.), and maybe Julia Newton (come to my mind).

But one thing should be clear, all those harping about how we need better criteria to "sieve out all non-elephants" (to stay within the parable) should know that:
a) Your are an "blind men" yourself
b) You might be an "non-elephant" yourself
c) The studies you trust might describe non-elephants
d) The studies you trust might describe non-elephant animals that are different from you

Yes, better (and more stringent) criteria might be helpful, but what we need are ways to look at "a collection of zoo animals" (parable again), and learn to differentiate them properly, both in a research setting, and in a clinical setting.

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Comments are moderated, because I am tired of Gerwyn-V99-The-Idiot and his moronic sockpuppets, and tired of the story of the two dogs, but I will try to publish everything else.

If you are not Gerwyn (and want to tell me something other than the story of the two dogs), then relax and write something! :-)


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