My letter to APA on CSSD

Submission to the Work Group for Somatic Symptom Disorders

The new category of Complex Somatic Symptom Disorder, or CSSD, bears a disturbing resemblance to the CDC's Holmes (1988) and Fukuda (1994) definitions of the disease Chronic Fatigue Syndrome (CFS). The requirement that patients experience six months of debilitating fatigue is taken straight from CDC's definitions. This development is disturbing for three reasons:

1. For two decades, British psychiatrists Michael Sharpe, Peter White, and Simon Wessely - all proponents of the ideology-driven "biopsychosocial" school of medicine - have ignored the CDC's definition for one of their own, which omits the physical symptoms required of the CDC diagnoses, and includes concurrent major mood disorders (exclusionary in Holmes and Fukuda). They have long insisted that "CFS" is really a modern version of "neurasthenia", which was removed from DSM a generation ago but is still diagnosed in the UK.

2. Earlier efforts to portray CFS as a somatisizing illness were foiled by requirements in the definition of somatisizing, such as the length of the illness (decades) and the absence of any gain. It strikes one as somewhat disingenuous to deliberately replace that category with another that can then be used to portray as psychological, a disease described as biomedical by the Chronic Fatigue Syndrome Advisory Committee of DHHS.

3. The APA has stated elsewhere that many of the changes in DSM-5 are intended to avoid gender biases in existing medical categories. Isn't it strange that the proponents of the new category CSSD have often stated 90 percent of victims of CFS (and CSSD by distinction) are female?

At the end of the 1980s, when CDC adopted the name "chronic fatigue syndrome" for a series of outbreaks of a mysterious, debilitating illness, Simon Wessely resurrected the diagnosis of "neurasthenia" [aka "the vapors"] for CFS patients in England. Although it is a direct violation of ICD-10, British psychiatric manuals classify CFS under neurasthenia, but could not do so in the U.S. because the diagnosis "neurasthenia" was removed from DSM a generation ago for gender bias.

In choosing the term neurasthenia, Wessely referenced not Freud but a New York physician named Beard who coined the term "neurasthenia" in 1869. Beard's book, "American Nervousness", is well-known among women's studies professors for advancing the theory that girls who were allowed to study science and math in high school would end up with either a shriveled uterus (his version of "hysteria"), or struggle with a life-long "nervous condition" (neurasthenia). Beard openly wondered whether allowing girls to attend high school would result in the death of the "American race"; the "Celtic race" (Irish immigrants) did not permit their daughters a secondary education, and they enjoyed large families as opposed to the small number of children born to the middle class of the "American race".

I have to say I never thought I would see that book cited as a reputable source by a contemporary scholar, but both Wessely and the late Stephen Straus of NIH used it frequently.

Adoption of CSSD will allow this bizarre nineteenth century view of the way women's bodies work to return to DSM, albeit under a more modern name.

In England, the insistence that CFS is really neurasthenia has led to cruel results, with women thrown into mental hospitals against their will. CBT (to cure the patient of her "inappropriate illness beliefs") and GET (to get her back into shape after she has allowed herself to become deconditioned) are the only treatments recommended by British public
health.

The result is that patients with the most severe cases of this disease are forced into hiding, bereft of all medical care whatsoever.

Adults in the U.S. have, in general, not been subjected to that level of cruelty - although the vast majority of doctors in the U.S. are ignorant of the large body of literature on the biomedical symptoms and causes of CFS and when they don’t actually harm their patients, they can’t help them. Too often they assume the problem is stress; too often they write a prescription for Prozac and send the patient away.

However, more vulnerable victims of CFS - teenagers - have been subject to removal from their homes and sent to foster care for the sin of having a poorly understood illness. Laypersons in school boards or child protective services have felt competent to diagnose Munchausen’s Syndrome By Proxy (or its more recent incarnation, Factitious Illness by Proxy) after hearing a lecture or reading an article on the subject. The more the parents fight the diagnosis, the more its proponents can claim it is true.

The phenomenon is reminiscent of the belief that autism is caused by "cold mother syndrome", or multiple sclerosis really "hysterical paralysis".

It is particularly ironic to see such a push towards psychologizing a physical disorder at the very moment evidence points to a new, serious cause.

In October 2009, an article published in "Science" demonstrated that 2/3 of a sample of patients diagnosed with CFS are victims of the third known human retrovirus, XMRV.

I was in that study, and I have XMRV.

At this point I must admit that I have a personal interest in this issue. But I have been fortunate; my university connections have allowed me to participate in cutting edge studies. Let me share with you what scientists have learned about CFS, using myself as the case study.

As mentioned, I have been diagnosed with the newly discovered retrovirus XMRV, only the third known human retrovirus.

I also have the 37kDa Rnase-L defect, and my natural killer cell function is 2%.

Perhaps that is why I suffer from recurring bouts of EBV, and have chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7, among other viruses.

I have been sick since suffering a blackout in my office in 1994. I have ataxia, expressive aphasia, expressive dysphasia, short-term memory loss, and profound confusion (I once poured a cup of coffee into a silverware drawer convinced it was a cup). I suffer from constant severe pain behind my eyes, in the back of my neck, and in the large muscles of my thighs and upper arms. Even one flight of stairs is very difficult for me. When we go places, we have to use a wheelchair. And I used to be an avid skier.

I cannot pass a simple Romberg test. I have abnormal SPECT scans and my VO2 MAX score is 15.5, lower than would be expected of my 85-year-old mother.

I have been helped greatly by an experimental immune modulator, only to relapse when permission from FDA to have the drug was removed.

If you believe that a retrovirus, significantly abnormal immune biomarkers, and herpes viruses known to cause encephalitis, meningitis, myocarditis, and other serious diseases when active over a long period of time - if you believe all of this can be resolved using talking therapy and SSRIs, then proceed with your new category.

Neither could help me in the past - only pharmacological intervention directed at the viruses and immune defects has improved my condition.

How many biomarkers and viruses must a patient have to be taken seriously? If one is in constant pain, does it not make sense to worry about pain? If one suffers from a significantly debilitating illness, does it not make sense to be concerned about the state of your health?

This new category would place those sensible concerns in the realm of abnormal anxiety dysfunction. Patients would be denied access to the tests - and treatments - I have been fortunate to be able to have.

I can’t see how that would benefit patients – but it certainly would help out insurance companies.

According to the CDC, at most, 15% of the 1 million adult patients with CFS in the U.S. even have a diagnosis. Of those 150,000, only a handful have had access to the care, testing, and treatment I have.

It is a Dickensian world, where the victims of this disease are relegated to extreme poverty, no matter what their profession prior to the illness.

Who, then, would benefit from creating a psychological category for this very biophysical disease?

This is a question that the profession needs to answer before proceeding with plans for CSSD.

[Note to readers: To read about the proposed psychiatric category of CSSD for DSM-5, go to the following website: Complex Somatic Symptom Disorder (CSSD). Instructions for comments are on the bottom of the page. We have only until April 20 to leave a comment.]

Mary M. Schweitzer, Ph.D.