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Multi-site Clinical Assessment of CFS

CDC’s multi-site clinical assessment to characterize patients with ME/CFS in clinical practices of clinicians with expertise in the illness continues.

The study examines the differences and similarities between ME/CFS patients in the clinical practices of experienced ME/CFS clinicians. We are using a standardized approach for data collection, meaning that all clinic sites use the same type of forms or instruments to gather information. This will help us to describe the differences and similarities among ME/CFS patients, which will be used to evaluate the ME/CFS case definition. Ultimately, this study aims to improve how ME/CFS is diagnosed and treated, as well as to shed more light on the underlying biology of the illness.

There are seven participating clinical sites through three contracts:

  1. Pain and Fatigue Study Center, NY
  2. Center for Neuro-Immune Disorders, FL
  3. Open Medicine Institute (OMI) consortium:
    • Open Medicine Clinic, CA
    • Sierra Internal Medicine Associates, NV
    • Fatigue Consultation Clinic, UT
    • Hunter-Hopkins Center, NC
    • Richard Podell Clinic, NJ

Frequently Asked Questions

Someone I know was selected for this study. How can I sign up?

Scientific studies, such as this one, follow strict rules for selecting participants. Unless you are a patient at one of the seven participating clinical sites, and meet the eligibility assessment, you cannot join the study.

How did CDC select the seven sites?

Full and open competition was used in soliciting offers for this requirement. The request for proposals (RFP 2011-N-13483) was posted in FedBizOpps in July 2011. This proposed procurement action was not set-aside for small business. All the valid contract proposals submitted within 30 days of the posting of the solicitation were reviewed and three contracts were awarded with a total of seven clinic sites.

What case definition was used for determining CFS cases?

No specific case definition was used. Any patient (aged 18 – 70 years) that is managed or diagnosed with CFS, post-infective fatigue (PIF) or myalgic encephalomyelitis (ME) at any of the seven participating clinical sites is eligible for participation in this study. Clinicians from each participating clinical site will determine whether a patient has CFS based on their clinical experience and expertise in CFS.

Why wasn't the Canadian case definition used for enrollment?

The goal of the study was to collect standardized data to characterize the illness as managed by clinical experts. This data can then be used to evaluate the strengths and weaknesses of current case definitions and determine refinements or additions of sub-groups for both clinical and research work.

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