Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Biospecimen Resource Access Committee (ME/CFS BRAC)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Biosample Access

Investigators interested in obtaining ME/CFS biospecimens should submit their application through the NINDS biosample online submission webform, which also details the application requirements. Requests are reviewed by the ME/CFS Biospecimen Resource Access Committee (ME/CFS BRAC), an external scientific review panel, to ensure that these biosamples are appropriately disseminated for research on ME/CFS. Potential uses include, but are not limited to; biomarker discovery, assay development and optimization, replication studies, metabolomic and/or genomic studies of ME/CFS. 

Step 1: Determine Sample Availability

Biospecimens and associated data are available from the following ME/CFS cohorts:

• Chronic Fatigue Initiative (CFI): a longitudinal observational study with biospecimens from a multi-site cohort of individuals with ME/CFS and unaffected controls.   
• Additional biospecimen resources (not reviewed within the ME/CFS BRAC)
  • The UK ME/CFS Biobank currently stores samples from over 600 donors including those with ME/CFS, Multiple Sclerosis, and healthy control donors.   This collection is supported in part by 2R01AI103629 from NIAID.  More information about the BioBank here and in this publication: Lacerda EM, Mudie K, Kingdon CC, Butterworth JD, O'Boyle S, Nacul L (2018).  The UK ME/CFS BioBank: A Disease-Specific Biobank for Advancing Clinical Research into Myalgic Encephalomeylitis/Chronic Fatigue Syndrome. Front. Neurol.
  • SolveCFS BioBank provides an on-demand sample collection system so they can collect biospecimens needed by investigators to conduct ME/CFS research. 

Clinical data associated with CFI biospecimens are available through the ME/CFS Research Network Data Management and Coordinating Center at RTI.  More details on available clinical data are available on RTI's searchMECFS database.  If you are interested in accessing CFI clinical data only, please contact Vicky Whittemore at vicky.whittemore@nih.gov.

It is recommended that investigators visit the NINDS Biomarkers Repository BioSEND website to learn more about

• Data and biospecimens available;
• Material Transfer Agreements and Data Use Agreements required for each collection;
• Any tissue processing or other fees associated with the biospecimens and tissue.

The NINDS BioSEND repository is managed by Dr. Tatiana Foroud, along with her Program Manager, Ms. Claire Wegel (biosend@iu.edu). Contact BioSEND to obtain sample availability information.  

Step 2: Submit Online Application

All applications are submitted through an online webform.  Within the webform, applicants are required to upload the following files (in pdf, gif, jpg, jpeg, or png file formats):

1. Biosketch
2. Research Strategy(pdf, 40 KB)  - (4 page limit)
3. Biosample template(pdf, 192 KB)  -  (This should include information on sample availability)

The first page of the webform requires the investigator to fill in basic information (e.g name, institution, address) and to upload the biosketch.  The second page of the webform requires the investigator to upload the application files (e.g. Research Strategy and Table Summary) and provide information about funding support for the study.

Please note that your application will be shared with Program Staff from NINDS as well as BioSEND at Indiana University.  The ME/CFS-BRAC subscribes to the ethical requirements, as described within  Confidentiality Agreement(pdf, 383 KB) .

Step 3: ME/CFS BRAC Reviews Application

The BRAC committee will assess the applications based on experimental rationale, feasibility/reproducibility of the assays, expertise of the investigator, availability of the institutional resources to support the study, and the statistical analysis of the number of samples required for the hypothesis testing.  Investigators will be notified by email regarding the outcome of the review (i.e. approve, approve upon revisions, or deny), ususally within a week after the review meeting.  Summary statements are released 2-3 weeks after review.  For applications that were ‘approved upon revisions’, investigators will be notified about concerns that need to be addressed before the application can move forward.  Please note that the ME/CFS BRAC does not provide funding. 

If sample access is approved by the ME/CFS BRAC, the two possible outcomes are:

1. If the study has funding, the samples are distributed to the investigator following a virtual meeting to introduce the sample distribution process (“on-boarding”) and after fulfilment by the investigator of additional requirements specified by BioSEND (i.e. MTA, Data Use Agreement, data analysis and sharing plan).  For questions, please contact Rebecca Price, Ph.D.
2. If the investigator has yet to obtain funding for the study, the BRAC will issue a letter to the applicant documenting provisional access to the samples requested.  This letter can be used to support an application for funding opportunities from the NIH or other organizations.  Conditional approvals will be valid for a period of up to 12 months.

View the current list of approved Biospecimen Requests(pdf, 79 KB) through the ME/CFS BRAC.