From Chronic Fatigue to Lyme: Medically Unexplained No More

Labeling sick patients psychiatric is medical abuse

special guest

by Pamela Weintraub

XMRV Retrovirus

Over the past year, forces at the highest reaches of medicine have made ever stronger efforts to burden the sick, diseased, and infected with psychiatric labels, consigning them to often mind-numbing psych meds and untreated infection, immune dysfunction, and pain. Some critics see this as psychiatric abuse at the hands of non-psychiatrists –since it is rarely psychiatrists, but rather, those in other specialities who step outside the circle of their training to impose these crude diagnoses on the medically ill.

On the Lyme disease front, one acronym of choice for the patients who fail “standard” treatments is “Medically Unexplained Symptoms,” or MUS. Another favorite phrase is “Chronic Multisymptom Illness,” or CMI. These acronyms join MBP, for Munchausen Syndrome by Proxy, a blame-the-mother theory of illness without credence in the psychiatric world –in all, an alphabet soup of invented diagnoses butressed by controversial disease definitions and unsupported by blinded, controlled studies in the peer review.

Taking one disease and muddying the water so much you render diagnosis this vague –well, that’s hubris. Taking a host of different infections and syndromes, and wrapping them ALL up in the same psychiatric ribbon without proof –as these experts do– is reckless, indeed.

For a window into the phenom, just roll back the clock to summer, when the Infectious Diseases Society of America convened a meeting in Washington, D.C. to review its controversial Lyme disease guidelines after panelists were charged with conflicts of interest by the attorney general of Connecticut. The attorney general felt the panelists were profiting from the guidelines they had set. The IDSA denied this was true.

The original guidelines recommended only short-term treatment for patients, leaving many of the sickest and longest-infected out on the cold. Yet scientists supporting the short-course standard (many of them members of the unseated panel) could hardly hide their disdain at the D.C. meeting, consistently attaching psych labels to the patients and their ills.

“I believe that clinical and scientific studies of these patients in the context of a functional somatic syndrome will be more likely to shed light on its pathophysiology and appropriate treatment,” said Arthur Weinstein, MD Professor of Medicine, Georgetown University Medical Center Chief, Rheumatology Division, Washington Hospital Center. “My suggestion, like that of others, is that our concept of narrow specialty-based diagnoses of patients with unexplained somatic symptoms – fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, atypical facial pain -TMJ syndrome, noncardiac chest pain syndrome – needs revision. These syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a functional or more accurately, dysfunctional, somatic syndrome,” he said at the IDSA review in July 2009.

Experts like Weinstein have been given free reign in the peer review, where those with like attitudes may tend the gates. “Psychiatric comorbidity and other psychological factors distinguished [chronic Lyme disease] patients from other patients commonly seen in Lyme disease referral centers, and were related to poor functional outcomes,” wrote Leonard Sigal, an academic rheumatologist who previously ran a Lyme clinic but now works for Big Pharma, in the journal Arthritis and Rheumatism in 2008.

Other scientists have stigmatized women with psychiatric labels for their physical disease –contending that chronic fatigue syndrome, chronic Lyme disease, and depression in females, in particular, may really be one and the same. Gary Wormser and Eugene Shapiro, an infectious diseases doctor and a pediatrician respectively published the proposal in the Journal of Women’s Health in 2009, despite lacking psychiatric training themselves.

When it comes to stigmatizing the sick, why let science interfere?

This past week the American Association for the Advancement of Science reported in its prestigious journal, Science, that 68% of chronic fatigue syndrome patients were infected with a new retrovirus, called xenotropic murine leukemia virus-related virus, or XMRV. A follow-up study, also reported in Science, raised the number of CFS patients infected with the retrovirus to 98%, in all. (Just 3.7% of healthy people are infected)

News of the retrovirus has circulated among scientists researching CFS for months, but that didn’t stop Sigal and colleagues –including psychologists but not a single psychiatrist– from hitting the peer review in September 2009 with the acronym du jour, CMI. That didn’t stop them from sweeping chronic fatigue patients up in their psychiatric theory-of-everything-under-the-Sun. “Conditions including, but not limited to, fibromyalgia, chronic fatigue syndrome, and Gulf War syndrome can be considered collectively as Chronic Multisymptom Illness,” the team wrote.

An actual psychiatrist, Brian Fallon of Columbia University, has this to say about so many diseases presenting in similar ways: “Those who say that the patients with MUS have a purely psychological illness are missing the point about the commonality of these syndromes,” he states. “The key element is that these illnesses share symptom profiles because these symptoms represent an abnormally perpetuated physiologic response. For example, it is well known that elevated proinflammatory cytokines produce these symptoms; also well known is the fact that depression can be a by-product of such an elevation because certain cytokines reduce the conversion of tryptophan to serotonin in the body.”

What does Sigal think the patients have? It would be one thing if he conceded uncertainty. Instead, he bequeaths psychiatric labels like “Major Depressive Disorder” and “Generalized Anxiety Disorder” to his special cohort, the people he says don’t have Lyme. (Of course, with Lyme disease diagnosis itself the subject of so much controversy, his restrictive diagnostic standards serve merely to highlight the fuzz.) Only if you read the fine print in the American Journal of Medicine do you get to this concession: “Depression and poor affect could be the result of living with chronic symptoms instead of being predisposing factors.” So true. (But no mention that the Lyme spirochete, like the syphilis spirochete, may itself infect the brain, causing infection-triggered neuropsychiatric disease.)

And then there’s the big news from Science, the top peer-reviewed journal for research in the world: A new retrovirus in 98% of chronic fatigue syndrome patients –a group also labeled “MUS” and “CMI” by Weinstein, Sigal and crew. Oops. No need for proponents of CMI to acknowledge XMRV. A little retrovirus won’t stop some flat-earthers from labeling sick patients psychiatric and consigning them to lives of untreated physical disease, rejected and in pain.

Despite the effort to keep patients running on empty, science is moving on. “I think this establishes what had always been considered a psychiatric disease as an infectious disease,”Judy Mikovits, the scientist leading the retrovirus work at the Whittemore Peterson Institute in Reno, said this week in the New York Times.

Hillary Johnson, the author of Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Sydrome Epidemic, has said it best in her blog:

A nova has appeared in the constellation. We knew it would appear some day-but in our lifetimes? Many of us, having given up on recovery, had merely hoped we might live long enough to understand the scientific basis of our suffering. Thousands, perhaps hundreds of thousands, of us didn’t make it, or simply gave up. Between the time Dr. Judy Mikovits of the Whittemore Peterson Institute and her collaborators at the National Cancer Institute and the Cleveland Clinic submitted their paper to Science and today, we know at least one woman, the British citizen Pamela Weston, chose assisted suicide rather than go on; in the note she left behind she wrote that she hoped her choice would, in some part, move the UK medical research forward. Might Weston have hung on had she known about XMRV? We grieve for those who couldn’t wait, couldn’t hang on, and acknowledge their bravery. For the rest of us, this is a day to celebrate.

I urge everyone to read this as well as Johnson’s prior post, a copy of a speech she recently gave in London in May 2009.

Pamela WeintraubPamela Weintraub is the author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine. You can read this and other insightful essays related to lyme disease on her blog.

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