Calling the set of symptoms a syndrome doesn't equal understanding what causes them

[AHunter3]

One annoying trend within the entire medical community is the tendency to behave as if putting a label on a set of undesirable symptoms means that you have figured out what causes them.

This is particularly true in cases where the symptoms are behavioral--e.g., alcohol abuse, temper tantrums, talking to invisible people while walking in mid-lane during rush hour, inattentiveness in class, thinking the government is broadcasting their agenda directly into your brain via lunar antennas, thinking you are the second coming of christ, etc., etc.--so the psychiatric system is spectacularly rife with it (its diagnostic category system consists of nothing else). But the problem lies not just the psychiatric system.

Furthermore, patients and the general public are major participants in this "turn the adjectives into nouns and maybe they'll go away" diagnostic magic trick, so it isn't even just the medical establishment.

Let's say I'm sneezing a lot, that I have congestion, I've been running an intermittent fever in the 101° range, my throat hurts like hell and I can hardly swallow, I've been coughing hard but unproductively, and I feel like I've been run over by a Mack truck. We could call that Upper Respiratory Syndrome, because that's shorter than reciting the list of symptoms and because that way, if you have 6 out of those 7 plus one that I don't have (bone-shaking chills, let's say), we can say it's the same thing.

But that doesn't explain why I have congestion, fever, cough, a throat that feels like someone went over it with a rat-tail file, and so forth. These things are not happening because I have Upper Respiratory Syndrome. These things are happening because a population of influenza viruses has taken up residence in my mucous membranes and the little bastards are destroying cells and releasing toxins. Upper Respiratory Syndrome is just shorthand for the symptoms. That shorthand is useful in epidemiology and elsewhere and I have no objection to its use, but an explanation it most certainly is not.

I'll even give credit where it is due: the older tendency was to slap a name on a set of symptoms that went much farther in implying that it was a disease that we comprehended. Long before we knew about the influenze virus, we had the word "influenza" to describe the symptoms, and the origin of that term was a mistaken belief that the sufferer had come under the "influence" of evil stars. Better to use terms that are more honest about our ignorance of the underlying cause, words like "syndrome" or "pattern" or "constellation". But that advantage is lost if everyone subsequently treats the naming of the phenomenon as equivalent to understanding it anyway.

(There's also the reverse situation where we succeed in isolating the cause of a medical phenomenon we've described as a syndrome, and then continue to use the "syndrome" name -- AIDS for instance).

Anyway, to wrap up:

• The reason you feel lethargic and unmotivated and miserable and just want to sleep all the time is not that you have clinical depression. The things that have helped other people with clinical depression may help you (or then again they may not); and a support group composed of other people with clinical depression may be useful to you (although again, not necessarily). But when the psychiatrist said you are suffering from clinical depression, the cause of the phenomenon was not being expressed. The DSM-IV defines depression as a list of symptoms. An underlying cause has not been confirmed yet, and there may in fact be fourteen dozen different conditions or situations that can cause it, ranging from personal to biological to social to cultural.

• The reason your kid is having problems in the classroom is not that he has ADHD. You already knew he was not inclined to pay attention and was restless and could not sit still, and you didn't regard that as an explanation. Now that someone has expressed that same observation as "ADHD", everyone is telling you what you should do about it. They might be right, as these things have been tried on other kids exhibiting the same behaviors, or they might be wrong, as some people don't care for the outcome and/or don't want their kids on drugs. Either way, it's not like your kid has been found to suffer from an enzyme deficiency that interferes with ADHD-uptake. They don't know why the pattern occurs, or why your child specifically manifests it. It could be neurological or it could be that the teachers are boring and the classroom environment stifling for a bright kid who is rebelling or it could be that your kid is a spoiled brat who likes to disrupt things.

• The reason you are overweight, have chronic high blood pressure, have high levels of fasting insulin in your bloodstream, and do not metabolize glucose effectively is not that you have Insulin Resistance Syndrome. Everyone with those symptoms has Insulin Resistance Syndrome, that's the definition of it, that's what those three words mean. Yeah, it looks like serious business, as it can be a precursor condition to Type II diabetes, and yeah you are therefore a person with a medical problem. And the doctors will probably do a better job of treating it now that they've become more aware of how these symptoms aggregate together, and their research will improve as a result of that realization. But unless I missed the news blurb, they don't know as of yet why it happens, and therefore they don't know why it happened to you. Insulin Resistance Syndrome isn't why. It is merely what.


PS -- I'm over the flu I just used it anyway 'cuz I needed an example.

[tomndebb]

It could be neurological or it could be that the teachers are boring and the classroom environment stifling for a bright kid who is rebelling or it could be that your kid is a spoiled brat who likes to disrupt things.

Boring teachers, stifling environments, and bratty personalities do not produce (or exhibit symptoms of) ADHD.

While your rant may have a basis in the complaint of "name it and walk away," the flip side is that without the name, people with SAD or CFS are simply dismissed as whiners and shirkers and kids with ADHD are simply branded troublemakers. You have a point regarding the cavalier attitude that may arise from naming, but it seems to go too far when you appear to dismiss the practice, entirely. (And you wander out of credibility with your final comment on ADHD. Not that there are no people who try to slap the name on bright/bored/rebellious/bratty kids, but those kids do not meet the criteria set forth in DSM-IV (or parental awareness).)

[Captain Amazing]

Well, you're right that calling something a syndrome doesn't indicate its cause, but people who have the same set of symptoms, as long as those symptoms are specific enough, probably all have the same cause. So, even though, for example, we don't know what causes ADHD, we know there are certain medications and certain behavioral therapies that seem to reduce the symptoms of those people who have labeled as having ADHD.

[Jackmannii]

Originally posted by AHunter3
One annoying trend within the entire medical community is the tendency to behave as if putting a label on a set of undesirable symptoms means that you have figured out what causes them.

This is particularly true in cases where the symptoms are behavioral--e.g., alcohol abuse, temper tantrums, talking to invisible people while walking in mid-lane during rush hour, inattentiveness in class, thinking the government is broadcasting their agenda directly into your brain via lunar antennas, thinking you are the second coming of christ, etc., etc.--so the psychiatric system is spectacularly rife with it (its diagnostic category system consists of nothing else). But the problem lies not just the psychiatric system.

Furthermore, patients and the general public are major participants in this "turn the adjectives into nouns and maybe they'll go away" diagnostic magic trick, so it isn't even just the medical establishment.

Let's say I'm sneezing a lot, that I have congestion, I've been running an intermittent fever in the 101° range, my throat hurts like hell and I can hardly swallow, I've been coughing hard but unproductively, and I feel like I've been run over by a Mack truck. We could call that Upper Respiratory Syndrome, because that's shorter than reciting the list of symptoms and because that way, if you have 6 out of those 7 plus one that I don't have (bone-shaking chills, let's say), we can say it's the same thing.

But that doesn't explain why I have congestion, fever, cough, a throat that feels like someone went over it with a rat-tail file, and so forth. These things are not happening because I have Upper Respiratory Syndrome. These things are happening because a population of influenza viruses has taken up residence in my mucous membranes and the little bastards are destroying cells and releasing toxins. Upper Respiratory Syndrome is just shorthand for the symptoms. That shorthand is useful in epidemiology and elsewhere and I have no objection to its use, but an explanation it most certainly is not.

I'll even give credit where it is due: the older tendency was to slap a name on a set of symptoms that went much farther in implying that it was a disease that we comprehended. Long before we knew about the influenze virus, we had the word "influenza" to describe the symptoms, and the origin of that term was a mistaken belief that the sufferer had come under the "influence" of evil stars. Better to use terms that are more honest about our ignorance of the underlying cause, words like "syndrome" or "pattern" or "constellation". But that advantage is lost if everyone subsequently treats the naming of the phenomenon as equivalent to understanding it anyway.

(There's also the reverse situation where we succeed in isolating the cause of a medical phenomenon we've described as a syndrome, and then continue to use the "syndrome" name -- AIDS for instance).

Anyway, to wrap up:

• The reason you feel lethargic and unmotivated and miserable and just want to sleep all the time is not that you have clinical depression. The things that have helped other people with clinical depression may help you (or then again they may not); and a support group composed of other people with clinical depression may be useful to you (although again, not necessarily). But when the psychiatrist said you are suffering from clinical depression, the cause of the phenomenon was not being expressed. The DSM-IV defines depression as a list of symptoms. An underlying cause has not been confirmed yet, and there may in fact be fourteen dozen different conditions or situations that can cause it, ranging from personal to biological to social to cultural.

• The reason your kid is having problems in the classroom is not that he has ADHD. You already knew he was not inclined to pay attention and was restless and could not sit still, and you didn't regard that as an explanation. Now that someone has expressed that same observation as "ADHD", everyone is telling you what you should do about it. They might be right, as these things have been tried on other kids exhibiting the same behaviors, or they might be wrong, as some people don't care for the outcome and/or don't want their kids on drugs. Either way, it's not like your kid has been found to suffer from an enzyme deficiency that interferes with ADHD-uptake. They don't know why the pattern occurs, or why your child specifically manifests it. It could be neurological or it could be that the teachers are boring and the classroom environment stifling for a bright kid who is rebelling or it could be that your kid is a spoiled brat who likes to disrupt things.

• The reason you are overweight, have chronic high blood pressure, have high levels of fasting insulin in your bloodstream, and do not metabolize glucose effectively is not that you have Insulin Resistance Syndrome. Everyone with those symptoms has Insulin Resistance Syndrome, that's the definition of it, that's what those three words mean. Yeah, it looks like serious business, as it can be a precursor condition to Type II diabetes, and yeah you are therefore a person with a medical problem. And the doctors will probably do a better job of treating it now that they've become more aware of how these symptoms aggregate together, and their research will improve as a result of that realization. But unless I missed the news blurb, they don't know as of yet why it happens, and therefore they don't know why it happened to you. Insulin Resistance Syndrome isn't why. It is merely what.


PS -- I'm over the flu I just used it anyway 'cuz I needed an example.

[Jackmannii]

I would explain why I just regurgitated your entire post without any sort of meaningful reply.

But since I don't understand exactly what happened, I will just shut up.

[AHunter3]

Tom, I'll dig out the actual DSM-IV diagnostic criteria and consider what you've said. I'll admit I pulled the ADHD example, if not quite out of my ass, then out of the back of my head and from a moderately dusty section at that. If the definitive description does not mesh with anything likely to arise from "bored brilliant kid in a stifling classroom" or "spoiled brat kid" etc., consider me to stand corrected. (My point, I think, still stands otherwise though).

[AHunter3]

Captain Amazing, I don't disagree with you, but I think I made the same point myself. (Or maybe you were acknowledging that and just reiterating it as something you wanted to emphasize, I don't know.)

[december]

Amen, and thank you, AHunter3

Another collection of symptoms that might not actually be a specific disease is Gulf War Syndrome. Far too many people think that just because it has a name it must exist as a particular malady with a single cause.

[Captain Amazing]

Originally posted by AHunter3
Captain Amazing, I don't disagree with you, but I think I made the same point myself. (Or maybe you were acknowledging that and just reiterating it as something you wanted to emphasize, I don't know.)

Well, maybe we agree. I just don't see why it's a problem. If someone has clinical depression, it would be nice to know what causes it (and people are working on that), but it's more immediately important to know how to treat it.

And, I think in a lot of cases, you will find there is one cause for the syndrome...we just don't know what it is yet.

[lezlers]

I actually just read a short article tonight about Sudden Adult Death Syndrome (or what it's soon to be called). I was wondering the same thing, AHunter3. The bulk of the article was about the urgency in naming the condition. When I was done reading I just thought to myself "they seem to think that by naming it, they'll make it go away..."

I won't argue with the fact that in order for something to exist, all you've got to do is give it a name. And once it has a name, it becomes a tangible thing that can be dealt with. I think pretty much everyone can agree with that. But I have noticed that there really seems to be a growing trend of a "well, we've given it a name, our work here is done" mentality. Giving something a name is the first step in dealing with it, not the whole game.

[furlibusea]

Have you concidered that maybe the only part you see is that these syndroms have a name. After that the press goes away then the scientists go back to the lab and do the work. If that wasn't the case there wouldn't be all the new drugs for these things. There is no profit to be made in a name unless you can sell it a product after all.

[AHunter3]

I have absolutely no objection to naming observed patterns.

As I said in the OP, doing so benefits people suffering from an ailment (makes it easier for them to keep current on support networks and facilitates communication with their doctors) as well as helping researchers (easier to accumulate data once you've defined a set of symptoms as an aggregate noun worthy of study).

What I'm griping about is the tendency in our society to attribute causality to that noun. It's ultimately mystifying (gives the illusion of being an explanation while not providing one) and therefore disempowering.

[lezlers]

I have no doubt that scientists will begin working on it, if they didn't they wouldn't be able to discover which drugs to dope the patient up on and the pharm. companies couldn't make all that money.

It just seemed rather odd that the article gave no mention at all about anything other than naming it. I personally think the amount of "syndromes" out there are insane, it seems as if the medical community will jump on the slightest abnormality, give it a name and then peddle a bunch of drugs for it with side effects that seem to be worse than the condition the paitent is taking the drugs for in the first place. Then they go and sell a bunch of drugs to counter the side effects of the origional drug with side effects of their own.

I really feel that there's not enough emphasis on preventative medicine.

[Captain Amazing]

Originally posted by AHunter3
What I'm griping about is the tendency in our society to attribute causality to that noun. It's ultimately mystifying (gives the illusion of being an explanation while not providing one) and therefore disempowering.

And sometimes it can be empowering. Being told "You have X syndrome" feels a lot better than being told, "There's nothing wrong with you, it's all in your head" or "Cheer up!" or "Your kid just doesn't want to pay attention. You just need to be stricter with him...he needs discipline".

[TVAA]

Originally posted by Captain Amazing
Well, you're right that calling something a syndrome doesn't indicate its cause, but people who have the same set of symptoms, as long as those symptoms are specific enough, probably all have the same cause. So, even though, for example, we don't know what causes ADHD, we know there are certain medications and certain behavioral therapies that seem to reduce the symptoms of those people who have labeled as having ADHD.

Correct.

The problem is that the definitions for things like Depression or ADHD are remarkably vague... and the professionals in question have been known to ignore the standards in order to get people help they feel they need.

[j_kat_251]

Another collection of symptoms that might not actually be a specific disease is Gulf War Syndrome. Far too many people think that just because it has a name it must exist as a particular malady with a single cause.

Like causes besides the war?

_{not an actual question}