Evaluation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education materials in local health departments

ABSTRACT

Purpose: To identify methods used by local health departments (LHDs) for reaching providers and the public with information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: During 2009–2012, we conducted LHD outreach in three stages: 1) materials needs assessment with LHDs in 18 states – 85% of 90 targeted LHDs; 2) dissemination to LHDs in 15 states – distributed 67,850 copies of ME/CFS printed materials to 121 LHDs; and 3) follow-up calls with LHDs 6 months after dissemination – 75% of 118 LHDs. The follow-up interview included 18 questions about ME/CFS material use, perception, and knowledge.

Results: Ninety-three percent of LHDs had no ME/CFS program or materials. ME/CFS was not rated a public health priority, yet 90% were interested in receiving ME/CFS materials. Of 89 LHDs completing the follow-up interview, 50% were in rural areas, 74% had heard about ME/CFS, and 80% had used the CDC-provided ME/CFS materials. LHDs incorporated these ME/CFS materials into existing programs and dissemination formats (e.g. kiosks and printed materials were preferred). Past use of provided materials did not impact LHDs’ plan to use materials in the future. Regardless of prior ME/CFS awareness, LHDs rated ME/CFS as an important health issue.

Conclusions: This paper highlights criteria to consider when developing outreach methods for LHDs including materials and dissemination. We learned materials should be concise and easily transportable to facilitate use in the community. Materials and outreach methods might require tailoring to LHDs as competing health priorities was the most common reason given by LHDs for not using ME/CFS materials.

KEYWORDS:

• ME/CFS
• myalgic encephalomyelitis/chronic fatigue syndrome
• education materials
• outreach
• health department

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the funding agency.

Notes on contributors

Dana J. Brimmer

Dana Brimmer is a Visiting Scientist and Behavioral Research Scientist with the Chronic Viral Disease Branch, Centers for Disease Control and Prevention. Dr. Brimmer has expertise in qualitative and quantitative methods including survey design and implementation, focus groups, individual interviews, program evaluation, and statistical analysis.

Ashley Hagaman

Ashley Hagaman is a NIH supported postdoctoral fellow in population sciences at UNC-Chapel Hill's Carolina Population Center. Her current research examines both biosocial and health system impacts on maternal well-being and family.

Charlotte Campbell

Charlotte Campbell is in the College of Nursing at the University of Florida and was a Peace Corp Volunteer.

Joanne Hsu

Joanne Hsu is a Public Health Analyst in the Division of Home Visiting and Early Childhood Systems at Maternal and Child Health Bureau, U.S. Department of Health and Human Services.

Jin-Mann S. Lin

Jin-Mann S. Lin is a statistician and Team Lead for the Epidemiology, Data Management and Analysis (EDMA) at the Chronic Viral Diseases Branch, Centers for Disease Control and Prevention. Dr. Lin has authored about 50 peer-reviewed journal articles and made over 70 oral/poster presentations at national conferences.