Saturday, October 25, 2008

Imaginary treatments for real diseases

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctors, mystified, could not produce an answer
So they told me it was all in my head

-- Everybody Knows About Me

The person who inspired the song "Everybody Knows About Me" pointed me to a New York Times article last night. According to this piece, half of doctors regularly prescribe placebos.
The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies.
The bioethicists are having a field day with this one. On the one hand, it's wrong for medical practitioners to lie. Patients trust doctors to know more than they do (though many with obscure diseases like ME/CFS often find themselves having to educate their own physicians), and to provide valid information and treatment. Prescribing medication that has no clinical effect on the illness is a clear betrayal of that trust. On the other hand, if the placebo effect actually works, then the doctor has in a sense provided real treatment ... right?

Well, not so fast. Scroll a few paragraphs down, and we find this telling quote:
Dr. William Schreiber, an internist in Louisville, Ky., at first said in an interview that he did not believe the survey’s results, because, he said, few doctors he knows routinely prescribe placebos.

But when asked how he treated fibromyalgia or other conditions that many doctors suspect are largely psychosomatic, Dr. Schreiber changed his mind. “The problem is that most of those people are very difficult patients, and it’s a whole lot easier to give them something like a big dose of Aleve,” he said. [Emphasis mine.]
Readers with fibromyalgia or ME/CFS or similar are at this point already throwing things at the screen, and don't need me to explain what's wrong with the good doctor's argument. But for those of you who are unfamiliar with fibro, here's a breakdown:
  1. Fibromyalgia is a real disease. It is formally classified as such in the International Classification of Diseases under Soft Tissue Disorders.

  2. Instead of bothering to do any actual research, Dr. Schreiber simply assumes his fibro patients are being "difficult."

  3. He prescribes medication that not only doesn't help, but might cause harmful side effects. Fibromites have enough pain in their lives without also having to deal with gastrointestinal problems.

  4. The doctor gets paid for dispensing treatment he knows to be clinically ineffective.
"Everybody Knows About Me" contains a passage describing how some medical professionals write off real pain and suffering as "all in your head" instead of admitting they have no idea what's wrong. That really happened to the guy I wrote the song about. Maybe he was lucky, though. At least the doctors who say you're crazy let you know where they stand. They don't trick you into going back to them instead of continuing the search for someone who will believe you ... and who will at least try to help.


Anonymous said...

IMO the only situation when it may be acceptable to prescribe placebo is when someone demands treatment for an illness/condition that isn't treatable or that wouldn't make much sense to attempt to treat (like a basic cold), if it doesn't cost much money and is a real placebo (or something like vitamin C which is very unlikely to cause side effects).

Fibromyalgia and CFS/ME are NOT like that. There are hundreds of medications you can try. If someone is very sensitive to all medications, then trying a placebo might seem to make sense - except that it would not work, because the person would definitely not expect it to work even if they didn't know it was placebo.

On the other hand, I have CFS/ME but I'm not sensitive to meds at all. I've taken loads of meds and supplements without any ill effects - yet calcium supplements cause me muscle aches. And often, calcium pills are used as "placebo", even in clinical trials!

According to the study some doctors even use antibiotics as placebos, which I find rather sickening. It's definitely bordering on malpractice. And of course, even NSAIDs kill a lot of people - tens of thousands a year.

Anonymous said...

I doubt a placebo helps when a doctor thinks you're a pain in his ass without a real disease and gives you any old thing just to get you out the door. The psychological effect of a placebo comes from believing that the doctor, herbalist, or what have you knows what's wrong with you and has given you a medicine that ought to have an effect, so your brain tricks your body into responding.

I would have no problem with being prescribed a placebo if it was safe and actually helped the symptoms I was complaining about.

DeppityBob said...

Reluctantly, after years of suffering, I went to a doctor who confirmed that I had fibromyalgia. My mother has it too; she kept insisting that I did, but I denied it, blaming it on other factors. But in the last few years it's become much worse, to where so many simple tasks are either exhausting or painful.

Then there are the "attacks." I don't know of a better word for them. They're clearly identifiable: they start with a fluttering weakness in a small pocket muscle just behind the armpit and under the shoulder. It then builds and strikes with any of a variety of symptoms: muscle weakness, shakes, sweats, chills, sniffling, anxiety, depression, soreness, spasms, and so on. Sometimes it's mild and it passes. Sometimes it's so debilitating I can barely make it to bed. But when the attack starts, I know it.

No one can tell me what I have isn't real. I actually hate having to talk about it because, for so long, I thought it wasn't real. I thought it was an excuse people latched onto to explain away dissipation, or aging, or just plain crankiness. I hate admitting to people that I have it because of the looks that say, "Oh, I am *sure* you *do*."

For years, I blamed my problems on the things doctors always do: weight and inactivity. That might explain my muscles being sore every single waking moment of my day, my pained and sometimes almost useless hands, or my excessive weariness. But it doesn't explain the attacks, the foggy thinking, and the famous pressure points.

Once I was prescribed Lyrica, and I wondered before I took it if it was a placebo. Doesn't matter; it did nothing for me. The rheumatologist told me it was the only thing he prescribed for fibromyalgia because it was the only drug that had any effect. But all it does is relieve some of the pain (supposedly); it doesn't do anything for the fibro fog, for the feeling of fire under your skin, for the shakes, or the sweats.

So I don't worry about taking placebos anymore, not since the discovery that the only drug that supposedly helps anything...doesn't.

CFS Facts said...

It's been proven that CFS patients do not have the Placebo Effect.

Why? Because the Placebo Effect requires you to trust the doctor who's telling you "this will work", and CFS patients have been lied to so much that they don't believe any doctor any more.

Or perhaps because CFS is physical, not psychological, and therefore there's no way to cure it just with mind games.