Begin at the beginning…

Meno: And how will you enquire, Socrates, into that which you do not know? What will you put forth as the subject of enquiry? And if you find what you want, how will you ever know that this is the thing which you did not know?

Plato, Meno.

Hi Everyone. For a long time I’ve wanted to write about the science (and lack thereof) in myalgic encephalomyelitis (ME) but didn’t know where to start. Hence this blog. Probably if you are reading this you’re, like me, a patient. As I’ve been sick for a while, I’ve tried to educate myself on the science and politics of our disease (hopefully with some success).

As myalgic encephalomyelitis patients, we face many difficulties: funding for good projects is often nonexistent, the federal government (specifically, NIH and CDC) keep finding new ways to screw us over and to mess up what should be a straightforward disease investigation. I hope to discuss some of these issues in the future…

I think the most basic question for any blog purporting to be about science is, “what is science?” I will take science to mean a distinct process of learning and the knowledge accrued from that process.

What is the process? To sketch it out, it would start off with an observation of some part of the world and then making guesses as to why some aspect of that part of the world works the way it does. Afterwards you either wait for the part of the world to be altered to confirm or deny your guess or change it, or a simulacrum, in a narrow way to confirm or refute your guess. If your guess is confirmed you can then further explore that part of the world by making a further guess on the assumption your first guess is true. If your guess is falsified you make a new guess, optionally incorporating the knowledge that the first guess was wrong.

Even in this sketch you can probably see potential hangups. There is the potential for fudging, either by inappropriate experimental design or inappropriate conclusions from your tests. There is also the potential for lying. All these problems plague scientific research and they also show up in popular research which purports to study myalgic encephalomyelitis but is really on the symptom of chronic fatigue. I hope to write more on this later.

More Hindrances and Problems.

Socrates: Have you ever seen it raining without clouds? Let Zeus then cause rain with a clear sky and without their presence!

Strepsiades: For my own part, I always thought it was Zeus pissing into a sieve.

Aristophanes, The Clouds.

Assuming people are truthful there is also the problem of insane logic as the above quote demonstrates.

The perception that parachutes are a successful intervention is based largely on anecdotal evidence. Observational data have shown that their use is associated with morbidity and mortality, due to both failure of the intervention1,2 and iatrogenic complications.3

Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials, BMJ 2003.

Another problem (which has had a great retarding force in funding myalgic encephalomyelitis research) has been an authoritarian outlook which deals in unbalanced skepticism-almost invariably against patients and non-elite sources. People with this outlook tend to credulously privilege certain sources (often double-blinded randomized controlled trials in elite journals) and deal with other sources with contempt.* If this attitude is widespread it tends to further elevate a small clique of people who have the tools and social capital to publish in such journals to the detriment of everybody else.  Unfortunately, scientific cliques can behave like cliques in general and may conspire to suppress publication of alternative views and block funding for experiments relating to them. Therefore, a stale authoritarian outlook can perpetuate itself far past when it should have been discredited had there been freer exchange of ideas and more balanced skepticism of sources.

One of the most ominous dangers of science is the risk that it, or a caricature of it, will be used as a bludgeon of political control. Modern Science has been remarkably successful at explaining real situations and events and any such system will be accounted for by a society’s governing class. This means science will not be of interest to those who do, or those who study it, but to those who wish to use it to sanction wielding power, sometimes in pursuance of monstrous acts.  We must therefore be suspicious of those who use the name of “Science” to sheath their true motives or as a truncheon to hold in place unjust and criminal hierarchies. In the case of myalgic encephalomyelitis it is astounding to see how many cruel hierarchies are in place to deny the patient’s dignity and their self-report, to wound them and deprive them of basic critical resources.

But, Why The Name?

Accuracy and precision are two important, differing, concepts. Using the example of a dart board, accuracy can be compared to having all your darts cluster around the bullseye, even if many of them are off by a substantial margin. Precision would be how close your total darts got to the center of your aim. However, this center might not be the bullseye–if you’re really bad at it, it might not be on the dart board at all! So at least some accuracy is a needed prerequisite for having meaningful precision, and winning the game. Why then “ME Precisely”, and not “ME Accurately”?  Just because “ME Precisely” sounds catchier in English–that’s it!

Thanks for reading!

3 thoughts on “Begin at the beginning…

  1. John this is great!
    Your point about precision versus accuracy brings to mind the PACE trial – Where are the English government achieved their goal with the “study” to suggest low-cost treatments for ME patients. But the “study” was not in the least bit accurate – in fact, more like grossly inaccurate and flawed.

    You explain it really well and I look forward to reading more. Thank you for doing this!

    1. Thanks Amy! PACE had so much wrong with it I don’t think anyone could cover in a single blog. I sort of view it as a miracle of mendacity it was published at all.

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