The searchMECFS website serves as an interactive tool to facilitate searching of biospecimens available for research purposes from studies of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The goal of searchMECFS is to facilitate effective study design by enabling researchers to determine biospecimen availability prior to formally requesting samples, simplifying biospecimen selection based on study participants’ phenotypic and clinical attributes, and facilitating the initial application process for access to selected biospecimens.
searchMECFS was created as part of the NIH-funded ME/CFS Research Network (MECFSnet) and is supported by the network's Data Management and Coordinating Center (DMCC).
Our mission is to help ME/CFS researchers discover new insights about the disorder, promote data sharing between experts, and present a comprehensive picture of the hallmarks of this disorder. We hope these efforts help millions of people with ME/CFS by enabling a faster path to better diagnostics and treatments.
The searchMECFS query tool is open to any researcher who will request biospecimens for research purposes only and is able to comply with the Data Use Agreement (DUA). New users must submit the registration form, including a brief description of how they would like to use the system, and agree to the searchMECFS DUA terms.
The registration form will be sent to the NIH for review and you will be notified when your account has been approved. The approval process should be quick (typically less than 2 business days) and you will be notified of any delays.
Please email searchmecfs@rti.org if you need assistance with registration.
searchMECFS site users must follow the DUA that was agreed to during registration. You can download a copy here. If you become aware of a violation of the terms, you must notify site administrators by emailing searchmecfs@rti.org with a description of the violation. User accounts may be suspended while the incident is reviewed.
ME/CFS is characterized by debilitating fatigue that is worsened by physical or mental activity and does not subside with normal levels of rest. For more information about ME/CFS, see the CDC definition of the disease or the MECFSnet FAQ page.
searchMECFS is hosted by RTI International and supports biospecimen requests for all organizations in the MECFSnet and other ME/CFS researchers. If you find an issue with the website, wish to request specific features be implemented in the future, or have a question about how to use the portal please email searchmecfs@rti.org.
Researchers with a searchMECFS account are welcomed to conduct queries to determine the availability of biospecimens that meet their ME/CFS research requirements. Researchers can then apply for the biospecimens of interest using the NINDS biospecimen request form. Once the request is approved, the searchMECFS team will meet with the applicant to finalize the biospecimen list and discuss logistics.
A more detailed outline of the process is summarized below:
When the application is approved:
*Note* that the biospecimens are provided to the researcher in a blinded manner. When the analysis of the biospecimens is complete, an unblinding key will be provided once the researcher provides the results to the mapMECFS interactive data portal.
mapMECFS provides access to clinical data associated with biospecimens and access to research results across many biological disciplines from studies focused on advancing our understanding of ME/CFS.
Both mapMECFS and searchMECFS were created as part of the NIH-funded ME/CFS Research Network (MECFSnet) and are supported by the network's Data Management and Coordinating Center (DMCC).
Click here to download the searchMECFS User Guide.
Click here to open the searchMECFS Help Video on How to Request Access and Logon.
Click here to open the searchMECFS Help Video on How to Create and Execute Queries.