It's All in Your Head

Many doctors, on hearing a patient describe sleeping many hours per day, leap to the conclusion that the problem must be depression. So many CFS patients get erroneous depression diagnoses that Dr. David Bell even commented on it in his book as a way for the physician to end his responsibility to search for an explanation for the symptoms.

However, Dr. Sheila Bastien, the neuropsychologist who analyzed hundreds of CFS patients, warns "Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value."

In Spring 1986, Dr. Bastien saw her first CFS patients at the behest of Drs. Cheney and Peterson. All 15 had positive brain scans and reported cognitive difficulties.

Her first, and most startling, observation was that the patients’ low IQ scores did not match up with their education and professions. She documented IQ losses of up to 40 points in those who had previously taken IQ tests, and noted that it was primarily due to poor performance on the right side of the brain. After testing 300 patients, she had found disparities between hemispheres of up to 45 points, indicating brain dysfunction. She concluded there was some organic brain disease at work. Depression would reduce scores across the board; this affected only certain functions.

"Initially, the patients seemed quite bright", doing well at defining words and reciting their medical histories. But on nonverbal, visual, and abstract tasks, they did poorly. "Even more bizarre anomalies existed in the realm of memory", which involves both sides of the brain. The patients did well with the written word, but were severely impaired with recall of the spoken word. "They were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions."

Right brain defects continued to appear. With the first batch of 15 patients, "Bastien was able to surmise only that something rather startling was occurring in the right brain hemispheres of fifteen people, something that could neither be faked nor be the result of even the most severe depression." The test results were not the pattern expected for depression and anxiety.

"My impression was, My God! This is a lot of damage to be seeing in a group of people who have these flu-like symptoms. ... I was horrified." Bastien was then invited to review MRI scans of the patients’ brains. "The lesions were bigger in the MS patients, but there were more lesions in the [CFS] patients." More evidence that there was an organic problem and not something the patients were imagining.

After testing 200 patients, she concluded "I have never seen this pattern before", but, it was, in fact, a pattern; a distinctive neuropsychological signature for the disease, proving above all that it was most assuredly not depression or anxiety, but an acquired brain dysfunction. The patients all reported that this dysfunction began with an infectious illness, and the MRIs confirmed lesions showing viral damage to the brain.

Like Dr. Bell, Dr. Bastien concludes "It’s not that I don’t respect and understand that some problems are psychological. But I have an ax to grind, as it were, in seeing psychologists clean up their act and physicians clean up theirs so there aren’t so many false negatives."

Unfortunately, to those who haven’t studied CFS in depth to know what they should be looking for, it’s easy to take the handful of symptoms that look like depression or anxiety and slap that label on the patient, and tempting to ignore the numerous symptoms that don’t match up. And when the patient fails to respond to anti-depressant or anti-anxiety medications, it’s equally easy to put the blame on the patient, calling them uncooperative or accusing them of not wanting to return to work, rather than, as Dr. Groopman suggests when the patient doesn’t improve, reconsidering the diagnosis to see if there’s another possibility that would explain the symptoms, and trying a different approach to see if a different type of medication might produce improvement.

For too many patients, "depression" is the end of the diagnostic process. Few outside the CFS community know of Dr. Bastien’s warning not to "accept psychiatric diagnoses at face value", and the underlying medical causes aren’t sought out as a result.

It’s well known that the sooner CFS patients get proper treatment, the more likely they are to return to work. Conversely, the longer a CFS patient suffers under an inappropriate psychiatric diagnosis with improper treatment, the less likely they are to return to work.

Patient and psychologist Ellen Goudsmit has researched CFS extensively. Cutting through the psychobabble that confuses those patients who aren’t familiar with the concepts, Goudsmit concludes that what patients need most is not psychiatry but anti-viral medication.

Cognitive Behavioral Therapy (i.e., the absurd notion that the virus underlying CFS can be cured by talking about it) was proven by researchers to be essentially useless. While some patients benefit from learning to cope with their newfound severe limitations, most found it of no help at all. Some, having been convinced by the therapist that the only thing wrong with them was a false belief that they were sick, pushed their limits to prove to themselves that they were not really sick, and relapsed.

In a recently-published article on pacing (interspersing periods of rest with periods of activity throughout the day), Goudsmit stressed "It is worth noting here that the original version of pacing was not conceived as a treatment or therapy for the illness as a whole and Goudsmit has made no claims about the effects of this strategy on visual disturbances, thermoregulatory abnormalities, sore throats, nausea, balance problems and some of the other symptoms associated with ME and CFS." She believes it is effective only when paired with proper medical treatment of the underlying virus and its symptoms.

Moreover, researchers have determined that pacing does not increase the total amount of work that a patient can do, it merely reduces the amount of fatigue the patient feels at the end of the day because they have not pushed themselves to the brink of energy bankruptcy. Instead of running on empty, they "top off the tank" several times during the day.

Just as all that glitters is not gold, all that looks like depression isn’t necessarily psychiatric in origin. Surface similarities between CFS and depression give way to a long list of divergent test results which prove that they are not the same thing. The "easy answer" may benefit the doctor who wants to sweep a cryptic patient out of the way, but it is of no benefit to the patient if it results in permanent disability from delaying proper treatment.

Tags: CFS, therapy, therapist, neuropsychology, neuropsych, virus, depression, anxiety, pacing, testing, memory