justinreilly
Senior Member
- Messages
- 2,498
- Location
- NYC (& RI)
by Prof. Ronald Pies,
http://www.psychiatrictimes.com/display/article/10168/1886900
relevant excerpts:
To view the article you have to sign up (for free). To comment you need to say you are a physician. If you comment, pls also send to his email, below. If you don't want to sign up and want to comment, just send him an email:
piesr@upstate.edu
I posted and emailed:
http://www.psychiatrictimes.com/display/article/10168/1886900
relevant excerpts:
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 normalityand that psychiatry has no objective tests to validate our disease categoriesthis report is both ironic and revealing. First, it suggests that patientsnot just physiciansmay 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 CFSand 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 anexperiential 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 aboundsand 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.4Here we meet yet another poorly defined term: disorderthe 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 clinicians eyes glaze over...
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 diseaseand 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.
To view the article you have to sign up (for free). To comment you need to say you are a physician. If you comment, pls also send to his email, below. If you don't want to sign up and want to comment, just send him an email:
piesr@upstate.edu
I posted and emailed:
Dear Prof. Pies,
An interesting article. I am a pwME/CFIDS.
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.