The CDC has posted the following description of a study it is sponsoring that will involve 450 patients of seven top ME/CFS specialists dedicated to forging a solid case definition with well characterized subsets.
Multi-site Clinical Assessment of CFS
CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.
The study will examine the differences and similarities between CFS/ME patients in the clinical practices of experienced CFS clinicians.
We are using a standardized approach for data collection, meaning that all clinic sites will use the same type of forms or instruments to gather information. This will help us to describe the differences and similarities among CFS patients.
The data collected using a standardized approach from expert clinical practices will be used to address the CFS case definition.
Ultimately, this study aims to improve how we measure illness domains of CFS. This may:
• Allow patients to be sub-grouped to improve therapy
• And allow the underlying biology to be discovered.
There are seven participating clinical sites:
• Pain and Fatigue Study Center, NY [Benjamin Natelson, MD]
• Center for Neuro-Immune Disorders, FL [Nancy Klimas, MD]
• Open Medicine Clinic, CA [Andreas Kogelnik, MD]
• Sierra Internal Medicine Associates, NV [Daniel Peterson, MD]
• Fatigue Consultation Clinic, UT [Lucinda Bateman, MD]
• Hunter-Hopkins Center, NC [Charles Lapp, MD]
• Richard Podell Clinic, NJ [Richard Podell, MD]
The study started in 2012 and aims to enroll 450 patients. Any patient (aged 18 to 70 years) that is managed or diagnosed with chronic fatigue syndrome, post-infective fatigue (PIF) or myalgic encephalomyelitis (ME) at any of seven participating clinical sites is eligible for participating in this study.
Study exclusions include illness onset at age older than 62 years, HIV infection, current pregnancy, or dementia.
Frequently Asked Questions
[See answers at http://www.cdc.gov/cfs/programs/clinical-assessment/faq.html#sign-up]
• Someone I know was selected for this study. How can I sign up?
• How did CDC select the seven clinical sites?
• What case definition was used for determining CFS cases?