ME/CFS Communication Planning and Strategy Development

Project Details

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PROJECT DESCRIPTION

The Need:

In September 2015, the Centers for Disease Control and Prevention (CDC) contracted with McKing to engage stakeholders in exploring how the Institute of Medicine recommendations based on the 2015 report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness could best be communicated through materials and content on CDC’s website.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has caused significant impairment and disability for millions of people. The pain and disability are compounded by the fact that people with these conditions too often are misdiagnosed and slighted by the health care providers to whom they turn for help.

How We Helped:

McKing staff developed and executed a recruitment plan to enlist qualified individuals from specific stakeholder communities – physicians, patients, advocates, educators, and researchers – to participate as members of the ME/CFS Steering Committee (SC) and the Technical Development Workgroup (TDW) to provide feedback on strategies to develop appropriate and helpful ME/CFS educational materials and content. The recruitment effort yielded 104 TDW and 16 SC member participants.  

Through a series of facilitated conference calls and an in-person roundtable meeting, McKing was able to gather feedback from the various stakeholder groups, so that each group’s concerns, priorities and insights could be shared, that would lead to the development of materials that represent the perspective of all.

Results:

Based on review and analysis of the findings from the multiple discussions, and other feedback from project stakeholders and participants, McKing was able to offer recommendations for CDC to continue the work on ME/CFS in three key areas: website revisions/updates; continued stakeholder engagement; and educational materials development.

In August 2017, CDC provided McKing a follow-on contract to continue the ME/CFS educational materials project focusing on continuing the engagement of the stakeholder groups and taking the recommendations and feedback from the first phase through to actual development of materials.