Hi, everybody! I’m PalMD (although my byline says differently), and you may remember me from such other blogs as WhiteCoat Underground and denialism. The folks around here were kind enough to give me a regular gig dispensing my brand of medical information transfer, and I’m going to start out with a basic question: what is a disease?
Human beings have some pretty powerful pattern-recognition software—so powerful that it can over-perceive patterns, sometimes causing us to confuse randomness for order. This impacts all aspects of human thought, including medicine.
In the realm of medicine, we define disease as alterations in physiology, anatomy, biochemistry, etc. that causes significant discomfort, disability, or increased risk for same. OK, really, I sort of cobbled that together, but you get the idea — a disease is a definable alteration in normal function. A corollary to this is that to define a disease, we must know something about what is normal (a discussion for another time). A related term is syndrome, which we usually define as “a set of signs or a series of events occurring together that often point to a single disease or condition as the cause.” What this effectively means is that we use the word “syndrome” to indicate a set of abnormal findings without a clear cause, and “disease” to indicate the abnormal findings with a putative cause.
(All this verbosity is leading somewhere—I promise.)
“Syndrome” is sometimes a useful place-holder term for a nascent disease. Sometimes, however, a set of signs and symptoms is simply coincidence that we erroneously recognize as a pattern.
In popular culture there’s a lot of talk about “overmedicalization”, that is, calling things abnormal that are simply slight variations in the wide range of human health. You’ll find people who argue that treating ADHD with medications is tantamount to abuse (and lost in the hysteria is the real possibility that we are over-medicating some kids). You’ll also find groups that argue that deafness or autism are simply “other”, but not “abnormal” as such. This, of course, is wrong. While a deaf or autistic person is just as valuable as a “normal”, and may have just as much to contribute to society, they are very far from normal human health.
And now you have the proper background to approach the problem of fake diseases.
Now, by “fake diseases” I very emphatically do not mean people who are faking being ill. Yes, there are those who “fake it” but that’s also a story for another time. By fake disease, I mean patterns of signs and symptoms that are just that—patterns. They may or may not constitute an actual disease or syndrome, but someone, somewhere, has decided to unscientifically attribute a patient’s problems to the wrong disease or to a disease that doesn’t exist.
Examples? You want examples?
Sure, Lyme disease is a relatively common (in some regions) tick-borne disease. Lyme disease is pretty cool (unless you have it), and represents a somewhat newly recognized entity. Further, it can have late-onset symptoms which are protean, including arthritis, heart problems, and neurologic disease. It is these qualities—the ability to cause late-onset symptoms, and the diversity of these symptoms—that attracts so much quackery. You see, we all have friends, family members, or patients who have lots of, well, tsouris, that is multiple symptoms and complaints without a unifying cause. So, if you live in an area where Lyme disease is common, and you have lots of symptoms that your doctor cannot explain, you may be tempted to find a doctor who will give you an answer—any answer—to explain why you feel lousy. Conversely, as a physician, you may feel powerless to help the person with fatigue, “brain fog”, aches and pains, etc. who doesn’t appear to have an underlying disease. A good doctor would see the patient frequently, provide emotional support, symptom relief, and help them avoid too many invasive diagnostic tests. A less skillful (or less scrupulous) doctor might approach things differently.
In the area of chronic Lyme disease, there are all manner of Lyme “specialists” who dispense unproven and dangerous treatments, the most common of which is long-term antibiotic therapy. This treatment can be very lucrative, and quacks have encouraged their pigeons to form advocacy groups–cults, really–that reinforce their false beliefs, encourage a sense of persecution, and continue to feed the coffers of crooked and misguided practitioners.
Another interesting fake disease is morgellons syndrome. This one is a bit different than chronic Lyme in that it isn’t the inappropriate expansion of a real disease, but a collection of unrelated signs and symptoms that has attracted a great deal of crankery, and no real science. There are a few “experts” out there who have no evidence of an etiology, but dispense “treatments”. Many of these practitioners aren’t even doctors, which is telling. Sufferers will claim to have fibers or parasites emerging from their skin, and eschew any rational explanation, preferring to believe that their symptoms represent some strange new parasitic disease (that happens to bear a strong resemblance to a known disorder, “delusions of parasitosis”.)
One thing many fake diseases have in common is the lack of objective evidence of a cause. For example, in chronic Lyme disease, advocates, when questioned about how a patient can have Lyme without any evidence for an infection with the organism have two responses: first, they will claim that a person has a case of “sero-negative” Lyme disease, meaning that the person has an infection for which not only is objective evidence not present, but cannot be present. Second, the lack of evidence of the disease is sometimes seen, bizarrely, as confirmation of its existence.
But once again, I’ve digressed. We started out trying to answer the question, “what is a disease.” We have a definition, but we need to “operationalize” it. A disease or syndrome, for it to be a valid entity, must be, like a scientific hypothesis, falsifiable, that is, there must be a way to show that a person doesn’t have the disease. In the case of chronic Lyme, even negative blood tests won’t disprove the illness for true believers. For morgellons, the less evidence there is for a true disease, the more strongly believers adhere to the idea that all of medical science is against them.
Fake diseases lead to a number of problems. First is that giving a diverse set of symptoms a false moniker may distract from looking for the real cause of the symptoms. Second, fake diseases attract fake treatments—they are quack magnets. Those who diagnose and treat fake diseases are never well-respected, well-published researchers and practitioners—they are always “mavericks” who are bucking “the system”.
When confronted with a diagnostic conundrum, there are some doctors who abandon science in the name of money or compassion. They are wrong to do so for either reason. There are those who give a fake diagnosis in order to sell a fake cure. These are the least compassionate sort of criminal. But some are acting out of a sort of compassion. However, giving someone a fake diagnosis may seem compassionate, in that you acknowledge their pain, but it leads to all manner of bad things.
When it comes to fake diseases, compassion is “the big lie”. Science is hard. Medicine is hard. It’s hard to tell someone in a compassionate way, “you have advanced pancreatic cancer and it’s going to kill you quickly no matter what we do.” It’s hard to tell someone, “you don’t really have a disease as such, but you are clearly uncomfortable and I will do all I can to help you feel better.” It’s hard to tell people what they don’t want to hear. But that’s our job, as physicians. We tell people what they don’t want to hear, and make it more palatable by offering our help and compassion. Compassion is not simply telling someone what they want to hear.
When I was a medical student, we were often confronted on rounds with very difficult questions. This questioning process, known as “pimping” involved a senior physician asking progressively harder questions to everyone on the team until we ran out of answers. One thing we learned very quickly was that “I don’t know” was not a good answer. A better answer was, “I don’t know, but I’ll find out.” The worst possible answer, though, was the lie. This is the compassion behind fake diseases and the quacks that associate with them—the lie of, “I don’t know what’s wrong, but I’ll make something up.”
People who believe they have fake diseases are victims in a way other patients never can be. Not only are they suffering, not only do people not believe them, but those that do believe them do them the worst disservice—they feed their false beliefs, distract from real treatments, and offer to sell them false compassion. These quacks should be ashamed. But of course, they have no shame.