To Hell And Back: The Dangers of Make-believe

[Guest guest]

Warning: this is a longish piece of reflection, containing no

medical data of any kind.

1. Thought experiments get out of hand

This idea of a determinative balance between 'Th1' and 'Th2'is not

so much a statement about the immune system as an statement about

how medicine can usefully augment or enhance the immune system.

This puts it in a different class than statements of fact or

opinion. What we are really seeing is a statement of intention.

In real life, medical research often operates like this: 'what

happens if I define my goal in these terms?'

The problem with such thought experiments is that one can so easily

forget that is all they are.

That can happen to the same people who conceived the thought

experiment in the first place. There is even a word for it:

reification, which means assigning an independent reality to

something that is really just an idea in my head.

The potential for confusion increases when people outside the

research discipline (and this would include, to my mind, both myself

and the creator of the MP) 'listen in' on its conversations in a

piecemeal fashion, often relying on abstracts where qualifying

statements tend to be omitted.

2. Ambition In A Time of Crisis

Cheney was going on about Th1 vs Th2 before the MP - he detected the

ambition some medical researchers entertained, that medicine could

exercise a kind of parental authority over the immune system,

deciding on its own criteria whether the immune system's activity

constitutes a 'balanced and appropriate' response to the challenges

confronting it, and adjusting that response as needed.

The whole concept of 'auto-immunity' is obviously knee-deep in the

same ambition.

The creator of the 'Autoimmunity Research Foundation' has absorbed

that ambition, but I think he has absorbed very little understanding

of it's true status, as a thought-experiment that may or may not

ever justify its existence by yielding bonafide medical advances.

Men of ambition are prone to such follies. I think now we are

starting to realize this about the founder of ARF, that what makes

him different is his ambition.

Yeats warned of a time when " The best lack all conviction, the worst

are full of passionate intensity. "

3. When I said " Do something, someone! " I should have been more

specific.

We all want to see a greater determination in medicine to address

our illnesses. We wave our hands frantically at researchers: what

about us?

I think there are many clinicians and researchers who want to

respond, who feel the weight of human suffering and still remember

that the justification for all their activities is to lighten that

burden. But they don't have answers, when they look honestly at the

state of the science what they see are critical knowledge gaps that

won't be filled until greater resources are allocated.

If they responded in a truthful way to our petitions, they would

say " we're sorry, the system we participate in is skewed toward

other concerns, before we can help with your illnesses you have to

help us by creating a climate where your suffering matters to those

who command the resources. "

Not very satisfying, is it?

But there are others who see us trying to flag down the medical

research community, who don't feel any constraint to answer our

petitions honestly.

In some cases, like the engineer, they are peripheral to the

research community, drawn to its imagined power but repelled by the

constraints under which it operates.

4. Medical Messiah

He comes to us and says 'ignore all that gloomy talk, I have

journeyed into the heart of medical science and emerged with all the

necessary facts to deliver you from your suffering.'

How compassionate! How self-less and Christ-like!

The questions which honest researchers will address in a tentative,

qualified way are answered by the medical messiah with total

confidence. His answers may not be internally consistent, let alone

supported by evidence, but he'll be damned if he's going to hemm and

hah all day while sick people suffer.

Such boldness! Such energy!

At some point it will become obvious that to relieve our suffering,

the medical messiah must also relieve us of the facts which define

it, and the critical faculties that allow us to distinguish those

facts from unsupported assertions.

5. Group Think

If we want to get well, all we have to do is replace our real

illnesses, which vary a great deal both in presentation and in their

response to any given therapy, with a single, imaginary condition,

susceptible to a single, imaginary cure.

For one person in isolation, that kind of self-deception is likely

to fail. So it has to be a group effort, grounded in group-think.

Anyone who casts doubt either on the Make-believe Pathogenesis or

the Make-believe Protocol threatens the recovery of every person in

the group. Because the group matters more than any individual, it is

fully within its rights to silence skeptics, no matter how

outrageous the methods used.

6. 'We'll Make A Believer Out of You Yet!'

In the land of Make-believe, there is no distinction between making

you well and making you a believer. When you believe, you'll get

well. When you're well, you believe.

When reality is very painful, it is hard to remember that Make-

believe can be much, much worse. Make-believe relieves its victims

of the one thing they had left, the authenticity of their suffering.

When you've lost that, you are officially in hell.

In hell, one sees intelligent people acting like fools, sensitive

people acting like bullies, people who were sick but sane flirting

with madness in a feverish effort to act like they're getting well.

I have not journeyed to the heart of medicine, but I am fairly

certain the answers are not hidden there. I have, however, logged my

time in the land of Make-believe, and I can tell you that it truly

is hell, right down to the sign over the door that reads " Abandon

hope all ye who enter here. "

7. Where We Are

We need to remember where we are. We are not in heaven, in some

ideal realm where wishes really are fishes that swim unerringly

toward their fulfillment.

We are also not, unless we choose to be, in hell. That is a hard one

for me to remember. The truth is, though, as bad as things are they

could be much worse.

We not in heaven, and cannot 'choose' to be by an act of faith. We

are not in hell, either, unless we choose to be. We are are in the

inbetween, the realm of earthly possibility.

8. A Third Way: Bringing Together Research and Patients

We need a better answer to " The best lack all conviction, the worst

are full of passionate intensity " than choosing sides.

We need to try and identify a third way.

We can help research along by evaluating new concepts from our

perspective, as people with privileged knowledge of these illnesses,

who on some level will always know more about them than anyone else.

We can establish a more direct relationship with the research

community, that relies less on physicians as intermediaries.

We can even think about initiating our own informal trials of novel

therapies (and this is where my original excitement about the MP

came from), but we need to be very aware of the pitfalls such an

effort is subject to (and this is why I wrote this essay).

9. The Terms of Life Must Be Honored

Life itself has a terminal prognosis. Our illnesses represent

accelerations of that trend. We will not suffer them forever, they

are fully contingent aspects of mortal life. If there are answers to

be found that will relieve of us these illnesses, we are not going

to find them by pretending we're in heaven or plunging madly into

hell.

To serve life in this world, you have to accept the basic terms on

which its given to us. Chronically ill people have more reason than

most to doubt that life's terms are, in fact, acceptable. Those

whose ambitions depend on prying other human beings loose from

reality will tend to assume we're easy pickings.

I think for the most part they're wrong about that. Part of what

makes it satisfying to talk to chronically ill people is that they

really exert themselves to come to grips with reality. We don't have

much to gain by lying, or as much to lose by telling the truth, as

more fortunate people. That is one of many reasons that medical

science needs us. Our influence is grounding.

Make-believe protocols may obscure that for a time, but eventually

they reap from us the overwhelming rejection they deserve, based as

they are on an equally sweeping rejection of the realities of our

illnesses.