My wife's occupation certainly does color my world view, but again I wasn't trying to attack anyone. Quite the opposite. Mental illness carries a huge and inappropriate stigma in our society, so whenever the topic comes up I do feel the need to take a strong stand. In one of the first CFS discussions we had on TWiV, someone actually raised the issue that the disease might be "just psychiatric." I immediately jumped in and reminded the audience that a psychiatric disease is no less real than any other medical problem. Whether there's a psychiatric component to CFS or not, I wanted to head off (and keep heading off) any idea that it's "not a real disease." In other words, I'm on your side whether you realize it or not.[/QUOTE]
Alan,
I’ll leave it to others to discuss the Alter paper. There are, unfortunately, very good reasons why people with CFS distrust the psychiatric.
When the CDC, and the NIH for that matter, got involved with CFS, around 1984, a description of the illness already existed: it was Ramsey’s definition of an illness called myalgic encephalomyelitis, whose icd code was under the neurological. This was, most likely, the illness that people in Incline Village and Lyndonville, NY, two of several cluster cases, contracted. When the CDC came up with its first research definition in 1988, they, for reasons we are still trying to understand, included psychiatrists in the discussion and changed the name from m.e. to chronic fatigue syndrome, trivializing a very serious neuro-immune disease and throwing the people who were sick with it under the bus.
This gave legitimacy to endless misrepresentations and mockery. It also empowered both the CDC and the NIH to starve it of funds and to shun bio medical research. Stephen Straus, the head of the NIH CFS program, was heard to say, “We have got to get those ladies back into their BMWs.” This is all recounted in what one day will be seen as a work of major historical importance, Oslers Web, by Hillary Johnson.
When the WPI published its paper CFS was on the verge of being included in the DSM 5 and having its icd code changed. That would have buried us. Our doctors are ageing and research, such as it is, carries very little cachet or attracts much funding.
From the point of view of history, psychology and psychiatry often have stepped in to explain all kinds of illness with devastating consequences for their victims. The idea that the medically unexplained should default to the psychological debases psychology as a discipline.
We have been treated to the most inane and inaccurate projections by psychiatrists. These have filtered out to the larger world engendering all manner of social disintegration. Marriages, families, friendships have been destroyed. Our very claim on being worthy of medical attention has been ridiculed. Doctors, if you have one at all, often see us as the proverbial problem patient. Did you know that suicide is one of the leading causes of death for CFS?
My indictment of psychology and psychiatry centers around the fact that they failed this population by not recognizing how marginalized it was, how desperately some of us needed support because of enormous physical and emotional suffering. Instead, we were ordered not to pay attention to our symptoms, that we were hypervigilant and activity phobic, and when we told these doctors that exertion made us ill, they blithely assimilated this to their impoverished model. They didn’t listen. People have been harmed by these treatments. If anything, you should be more concerned about the damage psychiatrists have done to us rather than fret about the possibility of taking ARV’s under the direction of an experienced infectious disease doctor.
If you really are sincere about wanting to understand the illness, you need to educate yourself about the role of psychiatry in CFS.