The mapMECFS website serves as the largest data sharing portal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and is endorsed as an approved NIH repository. mapMECFS 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).
This website enables researchers to gain a broader view of ME/CFS by:
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.
mapMECFS is hosted by RTI International and supports data sharing for all organizations in the ME/CFS Network 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 mapmecfs@rti.org.
You can also submit feedback by completing our Feedback Survey.
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, CDC definition of the disease or the ME/CFS Network's FAQ page.
Registration is required to access data on mapMECFS. If you are a new user and do not have an account for mapMECFS, you will first need to log in using one of the Researcher Auth Service (RAS) identities (Login.gov or ID.me) using an institutional email address, after which you will be able to create an account for mapMECFS. To register for mapMECFS, click Register in the top right corner of the home screen.
Provide the requested information, including a brief description of how you would like to use the system, and agree to the mapMECFS DUA terms. Your registration 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 days) and you will be notified of any delays.
While your account is pending approval, you will be able to log into the system, but you will not have access to any data. Once approved, you will be added to the mapMECFS Community Organization as a Member. This will allow you to browse any publicly available datasets on the site. If you wish to upload your own data, you must submit a Submitter Agreement and you will subsequently be added to your own Organization or another existing Organization. Please see more information within the Website Structure and Terminology section on the mapMECFS User Guide.
Please email mapmecfs@rti.org if you need assistance with registering.
Requests must be submitted by a Data Access Requester who meets all the following criteria:
Trainees or additional investigators supervised by the Submitting Investigator should be listed on the signed and approved DUA.
Data on mapMECFS comes from several sources:
What is an Organization? – An organization (most often) represents a single user or group of users who belong to the same laboratory or institution. Users must be associated with an organization to upload datasets.
What is a Dataset? – A dataset is a collection of resources (such as data files, phenotype files, result files, supporting files, or website links) with a description and study-level metadata from a single data type (e.g., Gene Expression). A dataset will generally contain one data file, one phenotype file, and an unlimited number of result files and/or supporting files.
A dataset may be Tier 1, Tier 2, or private to an organization.
Access Levels
User Requirements
User Access
Tier 1 Dataset Definition: A dataset that has been approved for access to all individuals who have an approved registered account and approved login credentials on the platform. Although available to the registered user community, access is still controlled and does not constitute open or public data.
Key Characteristics
User Requirements
User Access
Tier 2 Dataset Definition: A dataset that contains regulated information requiring additional review by the mapMECFS DAC and approval prior to access. Users must submit an additional formal application beyond the standard DUA before access is granted. This level is typically used for datasets with heightened privacy, regulatory, or governance requirements.
Key Characteristics
Chronic Fatigue Initiative (CFI) Study
The Chronic Fatigue Initiative (CFI) was an organization created and funded by the Hutchins Family Foundation to drive wide-scale research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Its goal was to disseminate its research findings to better equip the broader research community to work on mechanisms of ME/CFS and associated diagnostics, treatment, and prevention. It was a large U.S. multicenter case-control study (2011–2013).
Multisite Clinical Assessment of ME/CFS (MCAM) Adult Longitudinal Study
The Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) is a multisite clinical study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), initiated and funded by the Centers for Disease Control and Prevention (CDC). Initiated by the CDC, with multiple study stages (2012–2020).
Multisite Clinical Assessment of ME/CFS (MCAM) Cognition and Exercise Sub-study
The MCAM cognition and exercise testing (CE) sub-study was conducted from 2013 to 2019 at ME/CFS specialty clinics in the United States as part of the Multi-Site Clinical Assessment of ME/CFS (MCAM) study and was initiated and funded by the Centers for Disease Control and Prevention (CDC).
The Bateman Horne Center (BHC) Clinical Core was established to identify, enroll, and longitudinally track patients with ME/CFS alongside age, race, and sex matched controls. Its aims included serial sample acquisition and standardized clinical evaluations to define fatigue, daily function, post exertional malaise, unrefreshing sleep, cognitive impairment, and orthostatic intolerance. Longitudinal cohort study with annual blood and stool collection (3 years for ME/CFS cohorts; 2 years for controls).
The JAX Long COVID Cohort was established to identify, enroll, and longitudinally track patients with Post Acute Sequelae of COVID-19 (PASC). Its aims included serial sample acquisition and standardized clinical evaluations to objectively define fatigue, daily function, post exertional malaise, unrefreshing sleep, cognitive impairment, and orthostatic intolerance. Longitudinal cohort study conducted at the Bateman Horne Center in 2021, with four study visits over one year.
User Requirements
User Access
Organization-specific Dataset Definition: A dataset that has been submitted to the platform and is accessible only to users affiliated with the same organization as the submitting user and which are named in the Data Submitter Agreement. All datasets are assigned to this access level by default upon upload. This level is typically used during the data submission process or as a staging environment prior to broader sharing.
Key Characteristics
mapMECFS has an API to programmatically access, upload, and browse data and metadata. Example API queries in the curl, python, and R languages are available. Email mapmecfs@rti.org if you are interested in using the API.
mapMECFS site users must follow the DUA that was agreed to during registration. Please see a copy here. If you become aware of a violation of the terms, you must notify site administrators by emailing mapmecfs@rti.org with a description of the violation. User accounts may be suspended while the incident is reviewed.
If users wish to upload their own data to mapMECFS, they must submit a Data Submission Request and subsequently agree to our Data Submission Agreement (SA).
The mapMECFS Data Access Committee (DAC) will then review the data. To submit data to mapMECFS, please reach out via mapMECFS (mapmecfs@rti.org) to arrange a meeting for discussing the dataset submission. It is advisable to schedule this meeting at least 2 months prior to the desired submission date. Please see more information within the Upload and Share Data section on the mapMECFS User Guide.
The MECFSnet DMCC prioritizes, curates, quality controls, and shares publicly available data from recent manuscripts. The DMCC prioritizes data from manuscripts and databases based on recency, open access availability, and data accessibility (e.g., Gene Expression Omnibus [GEO], Metabolomics Workbench, and MetaboLights). The DMCC curates metadata, results tables, and supplemental files into a mapMECFS dataset, which then undergoes quality control by an independent team member before making the data publicly available on the site.
Please cite the original authors when using data on mapMECFS as indicated within each dataset. The use of mapMECFS should also be referenced using the following citation:
Mathur, R.* & Carnes, M.U.*, et al. mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites. J Transl Med 19, 461 (2021). https://doi.org/10.1186/s12967-021-03127-3
*contributed equally and are designated co-first authors
Code for the custom extensions implemented in mapMECFS is available for advanced authentication, search terms, and summary statistics.