Wednesday, April 27, 2011

The Phoenix Rising Letter to CDC's Dr. Unger by Cort Johnson

by Cort, Published on April 25th, 2011:

First we at Phoenix Rising want to congratulate Dr. Unger on your recent appointment as Acting Chief of the Chronic Viral Diseases Branch at the CDC. We realize that you assume this position during very challenging times when relations with the ME/CFS patient community are at an all-time low and trust and respect for the CDC is almost non-existent.

We firmly believe, however, that we are also at a crossroads and you have been given a unique opportunity to rebuild that trust by bringing fresh perspectives and creating open communication within the ME/CFS scientific, professional and patient communities. We fully support you in that endeavor.

Name - We request that the CDC recognize that CFS or ME/CFS is a worldwide disorder; that CFS is referred to as ME or ME/CFS in many countries outside the United States, and that several major organizations inside the US, including the IACFS/ME and NIH, now refer to CFS as ME/CFS. We request that the CDC put ‘CFS’ in its proper geographical and historical context by referring to it as ME/CFS.

Definition - We request that you abandon the Empirical Research Definition and utilize the expertise of the ME/CFS research communty to create the criteria for a new definition. We also request that you attempt to resolve the substantial gulf between the CDC’s interpretation of CFS and the interpretation of a substantial part of the ME/CFS research community, by investigating the effectiveness of using post-exertional relapse (post-exertional malaise) to differentiate chronic fatigue syndrome from other disorders.

Collaborate - The key recommendation from the CFSAC, IACFS/ME and CFIDS Associaton of America, at the public hearing regarding the 5 year strategic draft plan, was that the CDC collaborate more. We recommend that you work with the ME/CFS research community to identify and fill gaps in research. We request that you investigate the possibility of being part of a coherent International ME/CFS research effort that utilizes standardized protocols, identifies research opportunities, provides expertise across institutional boundaries and shares data and samples. We request that you become a partner with and actively support the CFIDS Association Research Network and the Whittemore Peterson Institute Biobank.

Communicate - The CDC-funded media and physician education campaigns were designed to alter the public’s perception of ME/CFS but ignored the CDC’s disastrous relations with its core constituency - the patients. We assert that regular communication with the patient community would allow both the CDC’s and the patient community’s needs and aspirations to be evaluated in a more neutral light - creating the opportunity for discussion and movement rather than the friction that currently characterizes the relationship. We request that you participate in regular meetings with members of the patient community. Read more>>

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