ME/CFS Q&A: Progress on CDC Study to Formulate New Case Definition?

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This week’s question & answer is from the Hunter-Hopkins Center’s free ME Letter for December. It is reproduced with kind permission of clinic director Charles Lapp, MD (DrLapp.com).

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Research Continues on Clinical Assessment of CFS

By Charles W Lapp, MD

For over one year Hunter-Hopkins (HHC) has been participating in a Centers for Disease Control contract study, the Clinical Assessment of CFS. [For background, see “CDC Announces 7-Clinic Study to Characterize ME/CFS and Its Subsets.”]

Patients who have chosen to participate have transmitted their de-identified records to a central server at the CDC. There, specialists can determine how various medical groups diagnose and manage persons with CFS/ME (PWCs).

We hope that this will lead to a standard intake form and formal approach to CFS/ME that can be taught to many other healthcare providers.

Practitioners participating in this project include Drs. Lapp and Laura Black, Dr. Andreas Kogelnik, Dr. Dan Peterson, Dr. Cindy Bateman, Dr. Rich Podell, Dr. Nancy Klimas, and Dr. Benjamin Natelson.

Phase One of this study will draw to a close in March 2013.

We sincerely thank all 37 of the HHC participants who have already uploaded their data to the CDC, and encourage the rest of our volunteer group to take this time to upload all of their data as well.  We really appreciate all of you who have volunteered to help!

We are already making plans for Phase Two of this contract, which may involve an annual follow-up, blood work, cognitive testing, or even exercise testing.

The protocol has not yet been completed, and we don’t know who will be invited to participate. In the meantime, the CDC has promised to reveal their findings to date on a dedicated website at: http://www.cdc.gov/cfs/programs/clinical-assessment/index.html

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