searchMECFS is an interactive online search tool for real-time navigation of biospecimen biorepositories from participating ME/CFS research studies. Selected participant-level demographic, phenotypic, and clinical characteristics can be used as search parameters to query the available biospecimens and assess available quantities from respective biorepositories. Flexible grouping of search parameters enables researchers to build complex queries and use query results to initiate applications to the National Institute of Neurological Disorders and Stroke (NINDS) Biospecimen Review Access Committee (BRAC) to request biospecimens of interest for their research.

searchMECFS hosts biospecimen and selected clinical data from ME/CFS studies. Users can select available clinical data, including participant demographics, patient-reported outcomes, quality of life measurements, and fatigue-specific measures, to narrow their biospecimen sample search. Biospecimen availability will vary depending on the study of interest.

Currently, data are available from two studies: the Chronic Fatigue Initiative (CFI) and the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Study (MCAM). The CFI study was supported by the Hutchins Family Foundation and enrolled 203 participants with ME/CFS and 202 healthy controls from five geographically diverse clinical sites across the United States. The MCAM study is supported by the Centers for Disease Control and Prevention (CDC) and enrolled 459 individuals with ME/CFS and 343 healthy controls from 7 ME/CFS specialty clinic sites across the United States. Additional information about these studies is available at https://searchmecfs.org/Home/Studies.

Any researcher who wants to request biospecimens for research purposes can register for the site. New users must comply with a Data Use Agreement and complete a registration form, including a brief description of how they plan to use the biospecimens. Final determination of account eligibility is based on all information provided during registration and is ultimately up to the searchMECFS team.

The full clinical datasets for CFI and MCAM are hosted on the mapMECFS website, which serves as a data sharing portal for ME/CFS research and is endorsed as an approved NIH repository. Individuals who are only interested in the clinical data and who do not intend to request biospecimens may register for mapMECFS and submit a completed Data Use Certificate for the appropriate dataset to mapMECFS@rti.org.

Navigate to the 'Data Query' tab at the top of the searchMECFS home page. Start by selecting your data source. Next, you can build a query by adding search criteria and/or nested criteria. These criteria combine variables (such as sample type, demographic details or patient reported outcomes) and filter values for those variables. Variables and values are combined using logical operators (AND/OR) to form a query. The system displays all biospecimens meeting the selected filter criteria. You may export query results to a CSV file.

Nested criteria allow for complex searches by embedding one query within another. The nested query is evaluated first, and its results are combined with the remaining query criteria to generate filtered results. For example, if you're looking for female ME/CFS cases that provided both DNA and RNA samples, you would first create a query for samples that are ME/CFS cases AND female and then nest a query specifying either DNA OR RNA samples.

Once researchers identify the biospecimens of interest using the searchMECFS query tool, they can then apply for the samples using the NINDS biospecimen online submission webform. The request will be reviewed by the NINDS BRAC. Once the request is approved, the searchMECFS team will set up a meeting with the applicant to finalize the biospecimen list and discuss logistics. Additional details can be found under the "Requesting Biospecimens" section above.

Applicants are discouraged from submitting applications that include samples from both CFI and MCAM cohorts as potential overlap in study participants between the cohorts cannot be evaluated.

CFI biospecimens are housed at the NINDS-supported BioSEND repository at Indiana University https://biosend.org, while MCAM biospecimens are stored at a CDC repository. Since CFI and MCAM biospecimens are stored in separate repositories, their aliquot preparation and shipping procedures differ slightly. Example aliquot sizes for both studies are available here. A signed Material Transfer Agreement (MTA) will be required prior to each distribution. For more details on storage and shipping, please contact BioSEND (biosend@iu.edu) or the CDC (cfs@cdc.gov).

RTI is the Data Management Coordinating Center (DMCC) for the ME/CFS Research Network and is responsible for this website's design and development. If you have any questions, please contact RTI at searchMECFS@rti.org.