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Open Access Highly Accessed Research article

A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Dana J Brimmer13*, Elizabeth Maloney15, Rebecca Devlin2, James F Jones1, Roumiana Boneva1, Caryn Nagler4, Lisa LeRoy4, Scott Royal4, Hao Tian1, Jin-Mann S Lin1, Jennifer Kasten46 and Elizabeth R Unger1

Author Affiliations

1 Division of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention, 1600 Clifton Road, MS-G41, Atlanta, GA 30033, USA

2 Abt SRBI, 640 North LaSalle, Suite 640, Chicago, IL 60610, USA

3 McKing Consulting, 2900 Chamblee Tucker Road, Building 10, Suite 100, Atlanta, GA 30341, USA

4 Abt Associates, 55 Wheeler Street, Cambridge, MA 02138-1168, USA

5 Current Affiliation: Food and Drug Administration, Office of Surveillance and Epidemiology, 10903 New Hampshire Ave., Building 22, Rm 2476, Mail Stop 3411, Silver Spring, MD 20993, USA

6 Current Affiliation: JBS International, Inc., 5515 Security Lane, Suite 800, North Bethesda, MA 20852, USA

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BMC Research Notes 2013, 6:309  doi:10.1186/1756-0500-6-309

Published: 2 August 2013

Abstract

Background

Chronic fatigue syndrome (CFS) has no diagnostic clinical signs or biomarkers, so diagnosis requires ruling out conditions with similar signs and symptoms. We conducted a pilot registry of unexplained fatiguing illnesses and CFS to determine the feasibility of establishing and operating a registry and implementing an education outreach initiative. The pilot registry was conducted in Bibb County, Georgia. Patient referrals were obtained from healthcare providers who were identified by using various education outreach initiatives. These referrals were later supplemented with self-referrals by members of a local CFS support group. All patients meeting referral criteria were invited to participate in a screening interview to determine eligibility. If patients met registry criteria, they were invited to a one-day clinic for physical and laboratory evaluations. We classified patients based on the 1994 case definition.

Results

We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation. Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses. Classification varied significantly by type of referral but not by previous history of CFS diagnosis. Healthcare providers referred more patients who were classified as CFS as compared to support group referrals in which more exclusionary conditions were identified. Family practice and internal medicine specialties made the most referrals and had the highest number of CFS cases. We conducted three CME events, held three “Meet and Greet” sessions, visited four large clinical health practices and health departments, mailed five registry newsletters, and conducted in-person office visits as part of education outreach, which contributed to patient referrals.

Conclusions

Referrals from healthcare providers and self-referrals from the patient support group were important to registry enrollment. The number of potentially treatable conditions that were identified highlights the need for continued medical management in this population, as well as the limitations of registries formed without clinical examination. Education initiatives were successful in part because of partnerships with local organizations.

Keywords:
Chronic fatigue syndrome (CFS); Fatiguing illness; Registry; Education