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Psychiatric Times. Vol. 28 No. 6
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COMMENTARY 

Are Some Patients Trying to “Medicalize” Chronic Fatigue?

By Ronald Pies, MD | June 22, 2011
Dr Pies is Editor in Chief Emeritus of Psychiatric Times and a Professor in the psychiatry departments of SUNY Upstate Medical University, Syracuse, NY, and Tufts University School of Medicine, Boston. He is the author, most recently, of Becoming a Mensch: Timeless Talmudic Ethics for Everyone; The Judaic Foundations of Cognitive Behavioral Therapy; and a collection of short stories, Ziprin’s Ghost.

The findings sounded like good news. As reported recently in The Lancet, chronic fatigue syndrome (CFS) may be successfully treated with a combination of psychotherapy and exercise. Specifically, results of a randomized trial showed that cognitive-behavioral therapy and graded exercise therapy have a moderate effect in the treatment of CFS.1

Yet a report in The New York Times2 suggested that the study results “. . . are certain to displease many patients and to intensify a fierce, long-running debate about what causes the illness and how to treat it.” The Times noted that “many patients . . . believe the syndrome may be caused by viruses related to mouse leukemia viruses, and they are clamoring for access to antiretroviral drugs. . . .” Furthermore, “. . . the new study . . . is expected to lend ammunition to those who think the disease is primarily psychological or related to stress [italics added].”2

For those of us accustomed to the charge that psychiatry is trying to “medicalize normality”—and that “psychiatry has no objective tests” to validate our disease categories—this report is both ironic and revealing. First, it suggests that patients—not just physicians—may sometimes have compelling reasons for applying the “medical model” to conditions whose etiology and pathophysiology remain controversial and obscure. Indeed, in light of the serious adverse effects associated with antiretroviral drugs, it is extraordinary that some patients would be clamoring for these agents, given the tenuous link between CFS and a viral etiology. I suspect this speaks to the profound lethargy and physical impairment experienced by some patients with severe forms of CFS—and this, in turn, speaks to an important truth regarding the nature of what we call disease. “Disease” (disease) is usually first recognized by those who suffer with it, and by their loved ones. It is not fundamentally a scientific term, but an experiential concept born of the human condition.3 Those who suffer with CFS understand this, and their predicament serves as a window into the conceptual and semantic problems that bedevil psychiatry.

Indeed, the Times report by David Tuller presents a microcosm of the linguistic ferment in the realm of medical nosology. Note that the reporter uses 3 different terms to describe CFS: illness, syndrome, and disease. This alone should tell us that in the matter of describing and classifying abnormal physical and emotional states, confusion abounds—and not just among journalists. Physicians and researchers, too, often bandy about terms such as “illness,” “syndrome,” and “disease” without much reflection as to the precise meaning of these terms, or how they differ from one another.

The Platonic enterprise of “carving Nature at its joints” is wasted surgery, if we are not relieving the suffering and incapacity of our patients.

It is notable that despite a lack of reliable biomarkers or “lab tests” for CFS, the CDC describes CFS as a “distinct disorder with specific symptoms and physical signs.”4 Here we meet yet another poorly defined term: disorder—the term of choice for conditions in the DSMs, and one that strikes some of us as a bit of a dodge. How, after all, does a disorder differ from a disease? If it is simply a matter of identifiable pathophysiology, then why is Alzheimer disease listed as a cognitive “disorder” in DSM-IV? Are we to infer that all “diseases” are also “disorders,” but that the converse is not true? It is enough to make the clinician’s eyes glaze over.

It is not merely intellectual laziness that underlies this unsavory stew of disease terms, although some-times that charge may apply. In truth, we physicians are, by and large, practical folk. We see our waiting rooms crowded with fellow human beings in various states of pain, suffering, and incapacity. We want to help them as efficiently and effectively as possible, and we don’t care very much, at the end of the day, whether we have alleviated a syndrome, an illness, a disease, or a disorder—and neither does the patient. We do care a great deal that the patient who came in feeling miserable leaves feeling better. We engage in a daily struggle to reduce the net amount of medical suffering and incapacity in the world—not to win prizes as philosophers of science or language.

Unfortunately, in recent years, some scholars and researchers have been fixated on the precise boundaries of mental “normality” and “abnormality”—as if Nature itself recognizes this neat dichotomy! To be sure, many of us—including this writer—have pointed to instances in which a condition has been prematurely or inappropriately labeled a “mental disorder.” For example, I have argued against including conditions such as “pathological bigotry” and “Internet addiction” in DSM-5, and I have raised serious questions regarding the validity of so-called hypoactive sexual desire disorder.5-7 Others have gone much further in their critique of psychiatric nosology, declaring some psychiatrists guilty of “disease-mongering” or pointing to the danger of diagnostic “fads” in psychiatry.8,9 (Recently, Dr Allen Frances directed me to an uproarious YouTube video, discussing the medical treatment of “excessive and annoying cheerfulness!”10)

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by Ronald Pies | December 23, 2011 12:22 PM EST

Update on the issue of viral etiology in "CFS":

December 22, 2011 - The final chapter in the saga of xenotropic murine leukemia virus&ndashrelated virus (XMRV) as a possible cause of chronic fatigue syndrome (CFS) was written today when Science announced full retraction of the article "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients With Chronic Fatigue Syndrome."

The retraction, written by Science Editor-in-Chief Bruce Alberts, PhD, caps 2 months of reality TV-worthy activity, including failed attempts to replicate the data, requests by some authors to have their names withdrawn from the article, surreptitious entry into offices, and the arrest of the senior author, Judy A. Mikovits, PhD, on charges of stealing laboratory notebooks and fleeing from Nevada to California to avoid prosecution.

This paper was partially retracted September 22, 2011, and an Editorial Expression of Concern was published July 1, 2011.

In the retraction, published in the December issue of the journal, Dr. Alberts cites 2 reasons for the retraction: failure in multiple attempts to replicate the data, and the quality of experiments included in the studies.

by Ronald Pies | July 01, 2011 12:38 AM EDT

Dear Mr. Reilly:

Thanks for your interest in my article, and for your comments. I am certainly no expert in this arena, and so, the question of what to "call"the condition in question seems to me very much up in the air. I will note that the paper published in Science, which I found on the blog website you sent me, is entitled,
A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome
I suspect that how we "name" the condition reveals a great deal of the underlying theory we bring to the table; e.g., the term "encephalomyelitis" very clearly implies an actual inflammatory process in the nervous system--so far as I am aware, this hypothesis has never been proved, with respect to a large number of patients who meet CDC criteria for the condition in question.

That said--and as I think my article implicitly states--I am by no means opposed to trials of anti-retroviral drugs for those subjects who clearly understand the risks and side effects of these powerful agents--after all, we are not talking about candy-corn, here**. Nonetheless, with proper informed consent, I see no reason why a pilot study of anti-retroviral drugs should not be undertaken, given the suffering and incapacity that patients with this condition often endure. Thanks again for your reflections on this controversial topic.

Best regards,
Ron Pies MD

P.S. Psychiatric Times readers may want to see this comment in Science on the study involving the supposed xenovirus connection to CFS.

http://www.sciencemag.org/content/early/2011/06/01/science.1208542

**Also see
http://www.avert.org/aids-drug-side-effects.htm
re: anti-retroviral drug side effects

by Justin Reilly | June 30, 2011 10:55 PM EDT

Dear Prof. Pies,

An interesting article. I am a pwME/CFIDS (not a doctor- had to say I was a doctor to post here). Please call the disease by it's proper names Myalgic Encephalomyelitis, CFIDS or at the very least CFS, not 'chronic fatigue.' Chronic fatigue is just a symptom. There are only a few dozen people on ARVs for XMRV/HGRV associated ME as far as we know; some of these are physicians with ME (prescribed to by their own physicians). Please see the fascinating blog XRx by a knowledgable Harvard-educated physician:
http://treatingxmrv.blogspot.com/

What we are clamoring for are drug trials, the ending of bias in ME and HGRV research and appropriate funding. CDC, NIH and the UK govt have been waging a war on pwME and the science for over 25 years. We would this to stop. Please contact me for more information if you are interested. Thank you.

Sincerely,
Justin Reilly, esq.






 
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