Tuesday, November 9, 2010

Garbage In, Garbage Out - Visitor Opinion


Garbage In, Garbage Out

posted by Mary Schweitzer, Ph.D. on 09 Nov 2010 at 10:53 am

You get what you are looking for (or as the old computer phrase goes, GIGO - garbage in, garbage out). The data set for this study does not diagnose the disease the CDC and NIH named "chronic fatigue syndrome" in 1988, though it claims to.

The CDC questionnaires that supposedly "operationalize" the Fukuda definition do nothing of the sort - they duplicate the Wessely definition used in the United Kingdom, which basically looks at chronic fatigue with no physical symptoms (that are not attributed to somaticizing). When the questionnaires were first released, the CDC's own estimate of the prevalence of CFS in the U.S. jumped from 500,000 (AACFS meeting, Cambridge MA, 1998) to 4 million in 2006.

An 8-fold increase in 8 years can mean only one of two things: either we are in the midst of a serious epidemic, or the Dr. William Reeves, head of CFS at CDC for 20 years, continues to play around with the public perception of the disease.

This is a very serious biological illness with a stupid name. (It was originally called epidemic neuromyesthenia in the U.S. and myalgic encephalomyelitis in the old British Commonwealth nations.) In 25 years of outbreaks in the U.S., all CDC has accomplished is giving the disease a silly-sounding name and fooling the public with cooked data sets. Would that be propaganda or censorship? Your choice.

I am not a disinterested observer. I have been disabled with the disease since October 24, 1994.

I tested positive for XMRV, the newly discovered retrovirus, in 2009. Let me share with you what else I test positive for, and have for 12 years: the 37kDa Rnase-L defect, recurring EBV, and HHV-6, Variant A, first discovered among AIDS patients (I was in a study). I do well enough on an experimental immune modulator called Ampligen. But when I have to go off it, I relapse. The FDA took it away from me in February 2008; by September 2008, I was seeing a new specialist who tested me for more biomarkers. We can add a natural killer cell function of 2%, active cases of cytomegalovirus, HHV-7, and three strains of Coxsackie B. My VO2 MAX score was below 15. I had an abnormal SPECT scan, and continue to have NMH, hypothyroidism, and Hashimoto's thyroiditis.

I hardly believe this can be due to a personality disorder - but telling the world that it IS prevents others from being tested and treated. Since insurance does not have to pay for most of this (thanks to CDC), only those of us who can find the money can be tested, let along treated.

The best estimate of prevalence is roughly one million adults - CDC says 4-7 million - either way, it's far too many people to be left to suffer alone. We do not know how many young people have it, but preliminary studies at DePaul would suggest the incidence in adolescence is equivalent to that in adulthood.

Psychiatry is supposed to help people, and it can. But when it is used to help insurance companies deny benefits to the desperately ill, it is time to start thinking harder about standards for that profession.

Mary M. Schweitzer, Ph.D.

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