Thursday, November 8, 2012

Who is an "expert" on CFS?

Note: As Dr. Pies states in his reply to a patient below he does not
claim to be an expert in the issues surrounding ME and CFS.

Perhaps the question then is who is an expert and how is an expert
defined? Certainly patients are stakeholders in the debate, but are
they also experts? All diseases have researchers who may also have the
disease in question, but that isn't what is at issue here. An expert, more generally, is a person with extensive knowledge or ability based on research, experience, or occupation and in a particular area of study. Based on this definition a patient is then an expert on their own experience.

So why then do some professionals disagree with or disbelieve these patient expert(s) when it comes to the patient's specific experience? If it is the patient's experience for example that exercise causes severe relapses, why then do researchers who have never experienced such relapses but who are also considered "experts" none the less, so insistent that exercise will help such patients? As for CBT, like any
other disease, behavioral therapy can help a patient if there are
psychological issues present, however there is no objective evidence
that it changes the underlying biological pathophysiology. If a
patient says CBT doesn't change their disease experience is it
possible that CBT is the "wrong tool" for the individual patient? You
can't "fix" what isn't broken.

Dr. Pies is correct that the terminology we use - disease, disorder,
illness, and in this case chronic fatigue vs chronic fatigue syndrome
- is defined differently depending on the field of expertise in
question, which then makes for a very confusing lexicon and scientific
literature. Standardization of definitions could be a start, but the
resulting "turf war" may simpy circle around to the same stalemate
things are currently in leaving everyone none the wiser.


COMMENTARY
Are Some Patients Trying to "Medicalize" Chronic Fatigue?

By Ronald Pies, MD | 22 June 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)

Part of our preoccupation with the boundaries of normality and
abnormality lies in our failure to produce "a model of mental
disorder," as Dr Niall McLaren11 recently argued. Indeed, I believe
psychiatry has been hobbled by the very terms now emblazoned on our
DSMs: "mental" and "disorder." Neither of these terms has been
satisfactorily defined, and neither has been very helpful. I would
much rather see a classification of "neuropsychiatric disease" or
"brain-mediated disease."12 More centrally, however, I believe we have
gotten lost in the "trees" of boundary issues, while failing to see
the "forest" of our patients' chief concern: the relief of their
suffering and incapacity; that is, the relief of disease (disease). I
believe it is from this experiential wellspring that our nosology
should issue. This same reality also defines our profession's chief
ethical responsibility: namely, the relief of medically based
suffering and incapacity by any safe and effective means. In short, I
am arguing that our nosology must be firmly rooted in our ethical
calling as physicians.

Even our diagnostic criteria should follow this ethical imperative.
Thus, rather than focusing primarily on etiological
validity13—achieved when a set of diagnostic criteria is based on an
identifiable pathogenic agent or process—I believe we should be
focusing on what I have called instrumental validity: the extent to
which our diagnostic criteria enable us to reduce the patient's
particular type of suffering and incapacity.14 (Unlike Kendell and
Jablensky,13 I do not draw a sharp distinction between "validity" and
clinical "utility.") We can gradually refine our prototypical disease
categories, based on how well their criteria hold up in empirical
studies of treatment; ie, the more the category criteria facilitate
effective treatment, the higher their instrumental validity. Only
secondarily should our disease categories be modified by other types
of validity, such as discriminant and etiological validity
(Figure).13,14 (Discriminant validity is essentially the degree to
which the criteria can identify one construct, such as "narcissism,"
without demonstrating a high correlation with an unrelated construct,
such as "schizotypy."15)

So, how does all this apply to CFS and the insistence by some that patients with CFS be treated with antiretroviral drugs? It would be unfair to conclude that those advocating this position are trying to
"medicalize" severe, chronic fatigue, in any pejorative sense of the term "medicalize." On the contrary: like physicians, these advocates are, in good faith, trying to alleviate disease—and they have every right to do so, regardless of how well or poorly we understand the pathophysiology of CFS. Of course, it is an empirical question as to whether antiretroviral drugs are either safe or effective in CFS. I have serious doubts, but only clinical investigation will resolve the matter. Nonetheless, there should be no quarrel over the reality of severe CFS as an instantiation of genuine disease, just as schizophrenia and major depression constitute real disease.

In my view, psychiatrists would do well to avoid scholastic
disputations over "where to draw the line" between normality and
abnormality.16 (If 99 in 100 stockbrokers jump out the window after
the stock market crashes, is that behavior "normal" or "abnormal"?)
So, too, with our nosology. The Platonic enterprise of "carving Nature
at its joints" is wasted surgery, if we are not relieving the
suffering and incapacity of our patients. This applies whether we are
discussing major depressive symptoms following bereavement17 or
severe, chronic fatigue. The central question for both our psychiatric nosology and our medical duty is just this: how much suffering and incapacity is burdening the patient who seeks our help? If the answer is, "Quite a lot," then our patient has bona fide disease, and it is ethically incumbent on us to provide safe and effective treatment.

References

1. White PD, Goldsmith KA, Johnson AL, et al. Comparison of adaptive
pacing therapy, cognitive behaviour therapy, graded exercise therapy,
and specialist medical care for chronic fatigue syndrome (PACE): a
randomised trial. Lancet. 2011;377:823-836.
2. Tuller D. Researchers say psychotherapy eases chronic fatigue, a
finding unlikely to satisfy. New York Times. February 17, 2011.
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=1.
Accessed March 12, 2011.
3. Pies R. What should count as a mental disorder in DSM-5?
Psychiatric Times. April 14, 2009.
http://www.psychiatrictimes.com/dissociative-identity/content/article/10168/1402032.
Accessed March 12, 2011.
4. Pubmed Health. Chronic Fatigue Syndrome.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002836.
5. Pies R. Is bigotry a mental illness? Psychiatric Times. May 1,
2007. http://www.psychiatrictimes.com/display/article/10168/55226.
Accessed March 12, 2011.
6. Pies R. Should DSM-V designate "internet addiction" a mental
disorder? Psychiatry. (Edgemont). 2009;6:31-37.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719452. Accessed March
12, 2011.
7. Pies RW. FDA lacks desire for flibanserin—but does hypoactive
sexual desire disorder even exist? Psychiatric Times. August 4, 2010.
http://www.psychiatrictimes.com/sexual-disorders/content/article/10168/1632801.
Accessed March 12, 2011.
8. Healy D. The latest mania: selling bipolar dis-order. PLoS Med.
2006;3:e185. doi:10.1371/journal.pmed.0030185.
http://www.plosmedicine.org/article/metrics/info%3Adoi%2F10.1371%2Fjournal.pmed.0030185;jsessionid=02A5A6715DC868BFDABF4DFD33E1EAFA.ambra02.
Accessed March 12, 2011.
9. Frances A. Normality is an endangered species: psychiatric fads and
overdiagnosis. Psychiatric Times. July 6, 2010.
http://www.psychiatrictimes.com/dsm-5/content/article/10168/1598676.
Accessed March 12, 2011.
10. FDA approves depressant drug for the annoyingly cheerful.
http://www.youtube.com/watch?v=_et969pc7iA.
11. McLaren N. Temper tantrums, mental disorder, and DSM-5: the case
for caution. Psychiatric Times. February 22, 2011.
http://www.psychiatrictimes.com/blog/dsm-5/content/article/10168/1803237.
Accessed March 12, 2011.
12. Pies R. The ideal and the real: how does psychiatry escape The
DSM-5 "fly-bottle"? Bulletin of the Association for the Advancement of
Philosophy and Psychiatry. 2010;17(2):18-20.
http://alien.dowling.edu/~cperring/aapp/bulletin_v_17_2/Vol17N2.pdf.
Accessed March 12, 2011.
13. Kendell R, Jablensky A. Distinguishing between the validity and
utility of psychiatric diagnoses. Am J Psychiatry. 2003;160:4-12.
14. Pies R. Toward a concept of instrumental validity: implications
for psychiatric diagnosis.
http://www.crossingdialogues.com/forthcoming_papers.htm. Accessed
March 12, 2011.
15. Pies R. How to eliminate narcissism overnight: DSM-V and the death
of narcissistic personality disorder. Innov Clin Neurosci.
2011;8:23-27.
16. Horwitz AV, Wakefield JC. The Loss of Sadness: How Psychiatry
Transformed Normal Sorrow Into Depressive Disorder. New York: Oxford
University Press, Inc; 2007.
17. Lamb K, Pies R, Zisook S. The bereavement exclusion for the
diagnosis of major depression: to be, or not to be. Psychiatry
(Edgmont). 2010;7:19-25.
For further reading
Ghaemi SN. The Concepts of Psychiatry. Baltimore: Johns Hopkins
University Press; 2003.
Schwartz MA, Wiggins O. Science, humanism, and the nature of medical
practice: a phenomenological view. Perspect Biol Med. 1985;28:331-366.

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