SUPPLEMENTARY INFORMATION:

Under the Paperwork Reduction Act of 1995 (PRA) (44 U.S.C. 3501-3520), federal agencies must obtain approval from the Office of Management and Budget (OMB) for each collection of information they conduct or sponsor. In addition, the PRA also requires federal agencies to provide a 60-day notice in the Federal Register concerning each proposed collection of information, including each new proposed collection, each proposed extension of existing collection of information, and each reinstatement of previously approved information collection before submitting the collection to the OMB for approval. To comply with this requirement, we are publishing this notice of a proposed data collection as described below.

The OMB is particularly interested in comments that will help:

1. Evaluate whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information will have practical utility;

2. Evaluate the accuracy of the agency's estimate of the burden of the proposed collection of information, including the validity of the methodology and assumptions used;

3. Enhance the quality, utility, and clarity of the information to be collected;

4. Minimize the burden of the collection of information on those who are to respond, including through the use of appropriate automated, electronic, mechanical, or other technological collection techniques or other forms of information technology, e.g., permitting electronic submissions of responses; and

5. Assess information collection costs.

Proposed Project

School-Based Active Surveillance (SBAS) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Among Schoolchildren (OMB Control No. 0920-1396, Exp. 4/30/2026)—Revision—National Center for Emerging and Zoonotic and Infectious Disease (NCEZID), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex, chronic, debilitating multi-system disease, affects up to 3.3 million persons in the United States. However, about 90% of people with ME/CFS have not received an official diagnosis from a healthcare professional. ME/CFS affects between 0.10% and 0.75% of children and adolescents, which often goes undiagnosed by healthcare professionals.

Data on chronic conditions among schoolchildren, such as asthma, has been collected over the years, but there has been little to no emphasis on ME/CFS in the United States. Chronic conditions among school-aged children likely account for a high proportion of chronic school absenteeism and school withdrawal. Conducting active surveillance among students using school nurses could expedite the diagnosis and management of children who present with symptoms commonly seen in ME/CFS. This involves educating school nurses about ME/CFS and its related syndromes, how to best approach parents and guardians when suggesting the diagnosis, and how to support the educational success of students with chronic diseases.

National active surveillance in schools for ME/CFS coupled with education of school nurses about ME/CFS could help improve measuring the burden of ME/CFS in children and provide insights for future plans to improve healthcare in children suffering from ME/CFS and other chronic health conditions. In the next phase of this project, we will expand the active surveillance project beyond the pilot schools to include additional schools in the pilot states as well as in other states. In this national rollout, school nurses will continue to receive education on data collection and ME/CFs as well as technical assistance and training on using the electronic data collection reporting platform.

This project will extend the currently approved data collection to involve more school nurses (respondents). This change will help us to track ME/CFS symptom burden in addition to the ME/CFS prevalence. CDC requests OMB approval for an estimated 631 annualized burden hours. There is no cost to respondents other than their time to participate.