Wednesday, January 23, 2008

Is It Real?

Yesterday’s paper had a long article about fibromyalgia and the controversy over whether it’s a made-up affliction or real, which begs the question as to how the medical community defines disease. Can disease only be defined by the ability to measure it with medical testing, or are the symptoms enough to give it disease status? For a non-medical person like me, this question falls under the classification of, “if a tree falls and no one is there to hear it, is there noise?”

On one hand there seems to be an agreement among the medical community that if a consistent set of symptoms exists in a high enough populace, then a “disease” or “syndrome” is added to the books – regardless of whether there is a test to measure its existence. I’m good with that. I believe we can have afflictions that science has no means of measuring yet.

But what happens when science changes their mind and decides that a disease isn’t a disease after all – as with fibromyalgia? Frederick Wolfe, the lead author of the 1990 paper that defined how to diagnose fibromyalgia, now believes that fibro is a physical reaction brought on by stress, depression, and economic and social anxiety. Yikes. What was real for 18 years is now bunk. Just like that.

This article made me think about other afflictions that are void of scientific testing, and the only barometer is a populace suffering from the same symptoms. Attention Deficit Disorder is a big ticket item. And what about that real heart breaker – Restless Leg Syndrome? (I can’t help but wonder if Big Pharma came up with that one on their own – the idea of it is just too silly to contemplate)

What’s interesting about these syndromes and disorders is that the drugs invented to ease patient suffering are as enigmatic as the disease itself. According to the medical articles I’ve read, no one seems to know how or why Lyrica or Ritalin, or Concerta work. The general acceptance of these drugs seems logical in a convoluted way because there are no medical tests to diagnose the problem in the first place. But the drugs are, nonetheless, prescribed by a community that normally says, “it must be scientifically proven.”

But what has me really puzzled is that the medical community is willing to accept an affliction as being real even though there is nothing to prove its existence other than collected data by respected scientists. They’re also willing to accept its pharmaceutical magic bullet, yet they turn their noses up at integrative healing methods – something that has no side effects. I can’t help but see a double standard at play. Hypnotherapy, Reiki, guided visualization, biofeedback, acupuncture, and chiropractic is reviled as a group of snake charmers who are out to fleece granny out of her last dime – even when its advocates are respected docs who have provided equally compelling data. Puzzling.

5 comments:

#1 Dinosaur said...

This post should be titled, "Attack of the Straw Men."

Hypnotherapy, Reiki, guided visualization, biofeedback, acupuncture, and chiropractic [are] reviled ... even when [their] advocates are respected docs who have provided equally compelling data.

For one thing, you're mixing apples and elephants. Hypnotherapy, guided visualization and biofeedback (essentially relaxation therapy) are qualitatively different from Reiki, acupuncture and chiropractic (magical thinking in lieu of any plausible scientific basis.) Lumping them all together is a "Trojan Horse" strategy, per Orac, via Dr. RW:

...such "soft" interventions as hypnotism, relaxation,acupuncture, and massage are included, but most of the interventions discussed would not be out of place in the paradigm of "conventional" medicine, which makes me wonder why they are called "alternative." In reality, what bothers me about the whole concept of CAM is that it's basically a Trojan horse through which some therapies that might be evidence-based and could easily be integrated into our standard armamentarium of medical therapies are the "foot in the door" behind which hardcore woo lumped together as CAM follow, woo such as homeopathy, craniosacral therapy, reiki, and even reflexology.

A key issue is that when looked at scientifically, the data you speak of for CAM are far from compelling. The "respectability" of those promulgating it is irrelevant.

Frederick Wolfe, the lead author of the 1990 paper that defined how to diagnose fibromyalgia, now believes that fibro is a physical reaction (emphasis mine) brought on by stress, depression, and economic and social anxiety.

Apparently he still recognizes it as a PHYSICAL REACTION. Sounds "real" to me. Depression is treatable, as is anxiety. I suppose it would make too much sense to target treatment at those entities; gee, I wonder if that's why I prefer SSRIs to treat fibro instead of Lyrica (which I'd never use anyway; it's just an expensive new version of Neurontin, aka gabapentin.)

RLS is also real, and can be a significant cause of severe sleep disturbance. It's a movement disorder that can be treated with drugs originally developed for movement disorders like Parkinson's disease. Although the symptoms are purely subjective (ie, nothing to prove its existence other than collected data by respected scientists) there is at least a plausible physiologic and pharmacologic rationale for the treatment. I use generic levodopa/carbidopa first line, leaving the newer drugs (with the TV commercials) only if the older (cheaper) ones don't work well enough. I can only hope that if someone you love suffers from it, they find a doctor who does something other than ridicule them for being "just too silly to contemplate."

I think ADHD falls somewhere between those extremes. I agree it's over-diagnosed and over-treated, but I have some kids who really struggle in school who improve so dramatically with stimulant meds that it seems cruel to label them all with the same broad brush.

mark's tails said...

Can't say it any better than #1 Dino did. But I would like to add one thing. I remember diagnosing Restless Leg Syndrome back in the mid 90's during my Pulmonary training, we did a rotation with sleep specialists back then. Although the diagnosis can be made on symptoms alone, it can actually be confirmed with a polysomnogram or sleep study, leg movements are actually measured during this type of study. Certainly this 'disease entity' has taken off since the large ad campaign but it did exist prior as was treated as #1 Dino mentioned above.

Lynn Price said...

Thanks for the explanation, mark's tails. I know it's rude to laugh at those commercials - it's just that this affliction seemed to come out of nowhere, and I couldn't help but wonder if pharma was leading the charge against a gullible populace who's always looking for a magic bullet.

mark's tails said...

Lynn, are you kidding? I love to laugh at those commercials. Some commercials you just have to laugh at. Certainly NOT laughing at the people who may suffer form those conditions being advertised, but sometimes the way they are advertised is funny, silly, or just down right inane.

Lynn Price said...

Mark, not being a doc, I didn't know this affliction actually existed. I mean, my legs have felt twitchy at night sometimes, but I sit at a desk all day, and it only happens when I haven't had enough exercise. Those commercials made me think, "Oy, what next? A drug for split ends?"

If you tell me one already exists, I'm going straight back to bed.