Commentary
Doctors’ Illness (Dis)beliefs

By Frank Albrecth, Ph.D.

You go to your doctor complaining of feeling weak and tired, depressed, poor appetite, weight loss, tingling in your hands and feet, stumbling and losing your balance, and having problems with memory and attention. And, oh, you almost forgot (it seems so odd) you have a sore tongue and your gums bleed.

A case of this kind was described recently (Feb. 22, 2000) in the Health section of The Washington Post. In spite of the fact that the symptoms are a dead giveaway, a series of doctors missed the correct diagnosis. As an afterthought, the neurologist ordered a blood test for vitamin B-12, which showed the patient had pernicious anemia.

A hematologist (blood disease doctor) would have suspected this illness immediately. Unfortunately, there are now so many thousands of known illnesses that all doctors have to be specialists, even those in so-called "general practice." They know a great deal within their narrow field but very little outside of it.

To this chaotic situation add some dollops of attitude. For instance, a nine-year old with myalgic encephalomyelitis (ME), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), had an acute onset of eye and neck pain and a slight fever. A visit to her doctor yielded "a virus." Nothing to be done. The mother took her home and gave medicines to reduce the fever. In spite of this the child's fever rose the following night to 104 degrees F. The mother took her to an after-hours clinic. Here is the rest of the story in the mother's own words:

"The doctor asked whether she had any other health problems. I made the mistake of mentioning M.E. He laughed and said, `In a child! That's impossible.' He asked which school she attended. I told him she is home schooled. He then said, `Don't you think it's time for her to get back to school? Once she is among her peers all of this will go away.' 

"That was just where I snapped. I looked him in the eye and spoke with icy calmness, 'Look, I am here with a very sick child, I do not wish to discuss her schooling with you, I am here so you can diagnose why she has this high fever. Now please attend to her.' The doctor looked a little surprised and then continued questioning me. In the meantime this child was dripping with perspiration, very close to tears, barely able to walk and as red as a beet."

Eventually the child was found to have tonsillitis, which the regular doctor should have caught. Why didn't he? Probably because he knew the child had ME. You can imagine him thinking, "Oh, here they are complaining again, about imaginary ills, that's all they do." The doctor at the after-hours clinic might well have overlooked the real problem as well, despite the high fever, had not the mother been insistent.

Specialist knowledge interacts with specialist ignorance, and this chaotic situation brings illness beliefs to the forefront. Doctors often see only what they expect to see, and become annoyed when pressed to account for symptoms they cannot easily explain. A couple of years ago a woman in Britain died of Mad Cow Disease after having initially been diagnosed by a psychiatrist as having "hysterical neurosis." I've seen things almost as bad in the treatment of my own family.

The solution, I think, is to put diagnostic algorithms onto the Internet.You put in symptoms, lab values, and examination results and out pops either a suggested diagnosis or some suggestions for further tests. Until that can be done, we are stuck in a situation in which attitudes as much as data determine diagnosis.

We need to convince the average doctor that ME/CFIDS is a serious illness rather than a subjective excuse for avoiding life's difficulties. If the proponents of a psychological basis for this illness win out in the marketplace of medical ideas, our experience of modern medicine will become even worse than it is.

Frank Albrecht is a mental health counselor whose wife and daughter have CFIDS. His web site for parents can be found at http://home.bluecrab.org/~health/sickids.html.