Monday, May 25, 2009

Liz's Comments to CDC

To the Chronic Fatigue Syndrome Advisory Committee:
It's quite clear that the CDC just keeps moving further and further away from studying the disease outbreaks in the mid-1980s from which 'CFS' was created. Biomarkers were identified by clinicians who saw patients during those outbreaks. Several physicians (including Dr. Paul Levine, a NIH epidemiologist at the time), noted that the disease conformed with previous outbreaks of Epidemic Neuromyasthenia, aka Myalgic Encephalomyelitis. There is a 50-year history of these types of outbreaks.
The biomarkers found in the patient population of the mid-1980s have been consistently ignored by the CDC. Private researchers are doing their best with limited funds to follow-up on those markers and find new ones. The CDC actually hinders their progress. The CDC's 'CFS' program is not meeting any of the public health goals of the CDC. I strongly urge that it be dismantled, and that the CDC limit its involvement to collection of laboratory data on viruses and other pathogens found in 'CFS' patients.
Recently, I wrote the following comment in response to the CDC's draft 5-year strategic 'CFS' research plan to the CDC:

Whatever happened to the CDC's National Enterovirus Surveillance
System (NESS)? From what I've been able to find through the internet, it was
running from 1961 through 2005. Through NESS, private laboratories voluntarily
reported findings of enteroviruses.
Given increased reports of enterovirus infection in people diagnosed with 'CFS',
why not resurrect this program?
And, considering the number of patients describing an "infectious-type" onset
who, after testing, are found to harbor a number of other viruses (see, for
example,, why not expand the program to include
Doing this is entirely in line with the CDC's historic role in monitoring emerging
diseases and is highly appropriate for the agency's future involvement in 'CFS'.
Since writing the CDC, I have found that a similar lab reporting system has existed since 2007, the National Respiratory and Enteric Virus Surveillance System (NREVSS). Unfortunately, only four viruses are currently monitored. (
So I ask, respectfully, that the CFSAC recommend expansion of this surveillance system to include viruses and other pathogens identified by non-governmental researchers as associated with 'CFS'.
Liz Willow

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