First Do No Harm
Its one thing to be so devastatingly ill that the simplest of personal activity is reduced to a crawl.
Its wholly another when through misdiagnosis and ridicule, youre branded as a misfit, lazy, a malingerer, and one whos told its all in your head. When this happens, an already hideous and debilitating illness is exacerbated and our population is doomed to decades of disease.
Ive seen it, Ive experienced it, its a common denominator, and it has to stop.
Currently, the American Psychiatric Association seeks to reclassify Chronic Fatigue Syndrome as a somatoform disorder [(denoting physical symptoms that cannot be attributed to organic disease and appear to be psychogenic (having an emotional or psychologic origin.)] in their fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled to be published in 2013.
If this happens, we will be plunged back into the dark ages of medicine and countless thousands of Americans will suffer the disgrace and humiliation caused by this dreadful misrepresentation.
Im just a lay person and dont always find the best way to present this in context. The following partial pre-release draft letter speaks eloquently for this issue, and can be shared, adapted, and/or sent to the DSM-5 Website.
(We) are deeply concerned by the American Psychiatric Associations possible reclassification of CFS as a somatoform disorder in DSM-5.
Researchers at both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) have documented the physiological and pathophysiological underpinnings of this illness. The CDC, under the leadership of Julie Gerberding, launched a multi-million-dollar campaign within the past few years to underscore that CFS is a multi-system disorder which can and should be treated as such.
Based upon the numerous, peer-reviewed studies that have linked CFS to infection and multiple organ systems abnormalities, classifying CFS as a Complex Somatic Symptom Disorder seems unreasonable and unwarranted.
As estimated and communicated to you by the IACFS/ME: Over the past 25 years, 2,000 peer-reviewed CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often lead to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact.
In the past, the absence of a documentable, medical explanation has relegated other illnesses to a psychiatric diagnosis. Illnesses given psychiatric diagnoses out of ignorance are later given more accurate, medical diagnoses with additional scientific research. Surely, you do not wish to demean the field of psychiatry by repeating the errors of psychiatrys past.
We are further concerned that the reclassification of CFS as a somatoform disorder in the DSM-5 will result in decreased care of CFS patients. The CDCs Chronic Fatigue Syndrome educational programs for physicians explicitly suggest the management of CFS by primary care physicians with the suggestion of a psychiatric consult if the patient manifests appropriate symptoms. The reclassification of CFS as a somatoform disorder in the DSM-5 will create confusion for many practitioners. The confusion thereby created will demean the illness, and the willingness of some practitioners to treat it. Moreover, the listing of CFS as a somatoform disorder may impact the ability of CFS patients to receive reimbursement of their treatment costs resulting in a loss of treatment and benefits.