Resources

Researcher Resources

Explore resources for ME/CFS Researchers

NIH Director's Blog

Moving Toward Answers in ME/CFS.

Posted on March 21, 2017

About Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Trans-NIH ME/CFS Working Group resource on ME/CFS.

FDA Voice of the Patient | Chronic Fatigue Syndome and Myalgic Encephalomyelitis

On April 25, 2013, FDA held a public meeting to hear perspectives from patients with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) about their disease, its impact on their daily life, and currently available therapies.

CDC's Public Health Matters Blog

ME/CFS: Making Strides to Enhance the Lives of Those Living with ME/CFS

Posted on May 14, 2019

CDC ME/CFS Webpage

CDC's comprehensive resource on ME/CFS.

Common Data Elements

The National Institute of Neurological Disorders and Stroke (NINDS) and other Federal agencies and international organizations have the common mission of developing data standards for clinical research. The first set of Common Data Elements (CDEs) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was developed in 2017.

ClinicalTrials.gov

Search for privately and publicly funded ME/CFS studies.

Scientific Research Contacts for Technical Assistance

Investigators interested in doing research on ME/CFS and submitting grant applications to NIH are strongly encouraged to consult with the Scientific/Research Contacts in the area of science for which they are planning to develop an ME/CFS application. For a listing of representatives from 23 NIH Institutes, Centers and Offices who are members of the Trans-NIH ME/CFS Working Group.

NIH Guide for Grants and Contracts

The official publication for NIH medical and behavioral research grant policies, guidelines, and funding opportunities.

NIH Office of Extramural Research

Comprehensive information about grants, funding opportunities and notices, forms and deadlines, and how to apply.

Center for Scientific Review

The Center for Scientific Review is the portal for NIH grant applications and review for scientific merit. Applicant resources offer assistance with planning, writing and submitting a successful research application.

NIH Electronic Research Administration

Systems at the Electronic Research Administration provide applicants, grantees and federal staff the tools necessary for electronic processing of grants.

Open Medicine Foundation

Open Medicine Foundation (OMF) supports and facilitates open collaborative research to find effective treatments and diagnostic markers for ME/CFS with the engagement of patients, clinicians and researchers.

Bateman Horne Center

The Bateman Horne Center is a non-profit organization that empowers patients, advances research, and improves access to care for those impacted by ME/CFS and fibromyalgia.

NeuroBioBank

The NIH NeuroBioBank catalyzes scientific discovery through the centralization of resources aimed at the collection and distribution of human post-mortem brain tissue. The networked brain and tissue repositories distribute thousands of samples per year to the research community studying neurological, developmental, and psychiatric disorders. Post-mortem biospecimens from individuals with ME/CFS are available at NeuroBioBank. For more information about obtaining biospecimens for research and for information for potential donors, go to:

UK ME/CFS Biobank

The UK ME/CFS Biobank is the first ME/CFS-specific biobank in Europe, and one of the first in the world. It has collected over 30,000 aliquots of blood from patients with ME/CFS and multiple sclerosis (as well as healthy controls). Funding is supported in part by a grant from NIAID, R01-AI103629.

Community/Advocacy Resources

Explore resources for the ME/CFS advocacy community

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (SMCI) is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support.

ME Action

#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Open Medicine Foundation

Open Medicine Foundation (OMF) supports and facilitates open collaborative research to find effective treatments and diagnostic markers for ME/CFS with the engagement of patients, clinicians and researchers.

Bateman Horne Center

The Bateman Horne Center is a non-profit organization that empowers patients, advances research, and improves access to care for those impacted by ME/CFS and fibromyalgia.

Grants that fund MECFSnet are managed by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Disorders and Stroke. This website was supported by a grant from NIH, grant #U24-NS-105535.

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What is ME/CFS?

Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.