ME/CFS Resources (original) (raw)

For Researchers

One focus of the Trans-NIH ME/CFS Research Working Group is to increase the quantity and quality of applications for research on the cause, diagnosis, underlying mechanisms, or treatment of ME/CFS. Investigators are strongly encouraged to consult with the Scientific/Research Contacts for the area of science for which they are planning to develop an application. Early contact provides an opportunity for Institute or Center staff to discuss the proposed scope and goals and to provide technical assistance, information, and guidance on the NIH application process.

Understanding NIH Funding

ME/CFS New Investigator Resources
NIH resources for understanding, planning, writing, and submitting successful research grant applications.
Scientific/Research Contacts for Technical Assistance
A list of scientific/research contacts at the NIH who can help investigators plan and develop ME/CFS research grant applications.
NIH Research Portfolio Online Reporting Tools (RePORT)
A website that provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH supported research.

Research Resources

UK ME/CFS Biobank
The UKMEB is the first ME/CFS-specific biobank in Europe and one of the first in the world. Using a rigorous and consistent set of scientific protocols, UKMEB has collected over 30,000 aliquots of blood from individuals with ME/CFS and multiple sclerosis (as well as healthy controls). It is supported in part by a grant from NIAID.
NIH NeuroBioBank
The NIH NeuroBioBank is a network of brain and tissue repositories that collects and distributes human post-mortem brain tissue, including biospecimens from individuals with ME/CFS. The networked brain and tissue repositories distribute thousands of samples per year to the research community studying neurological, developmental, and psychiatric disorders.
Common Data Elements (CDE) for ME/CFS
CDEs are data standards that can be used in clinical studies and clinical trials for ME/CFS.

Research Tools

ClinicalTrials.gov
A database of privately and publicly funded clinical trials from around the world.
mapMECFS
mapMECFS is an interactive data portal providing access to research results across many biological disciplines from studies that are focused on advancing our understanding of ME/CFS.
searchMECFS
searchMECFS is an interactive search tool for navigating biospecimens available for research purposes from studies of ME/CFS.
NIH-Supported Data Sharing Repositories
To help researchers locate an appropriate repository for sharing or accessing data, the NIH maintains lists of data sharing repositories. mapMECFS is listed as a domain-spcific repository.

FDA Resources

Guidance for Industry CFS/ME: Developing Drug Products for Treatment
This guidance focuses on specific drug development and trial design issues that are unique to the study of ME/CFS and on the FDA’s current thinking on how effective treatments can be developed.

For the ME/CFS Community

We encourage people who have been diagnosed with ME/CFS to take an active role in the research process. Below are some available resources for people who are interested in participating in a clinical trial or clinical study, seeking published results of previous studies, and contacting appropriate healthcare professionals.

To find a clinical trial or clinical study that is enrolling individuals with ME/CFS, conduct an advanced search on ClinicalTrials.gov. Enter "myalgic encephalomyelitis/chronic fatigue syndrome" in the search term.

ME/CFSnet Webinar Series

The Community Advisory Committee for the ME/CFS Research Network developed a webinar series to provide updates about ongoing reseach and tools developed during the first four years of the research network. Each video features a 30-minute presentation about each research center followed by a Q&A.

This page last reviewed on October 8, 2024