Frequently Asked Questions about ME/CFS Research

NIH funds research which seeks to determine the cause and the underlying mechanism(s) for ME/CFS. Included in NIH’s portfolio is basic research on tissues, cells, and molecules from people affected with the illness, and research on the pattern of ME/CFS across multiple geographic locations to determine the prevalence of the illness. NIH’s research serves as a foundation of knowledge for various aspects of the illness that physicians and researchers can use to develop more effective diagnosis and treatment. Projects include studies of immune system function, pathophysiology, neuropathology, and vascular dysfunction. NIH also supports conferences and workshops that help connect investigators in the numerous scientific disciplines involved in ME/CFS research. A list of research projects on ME/CFS supported by NIH can be found on the Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).

The Working Group does not have grant-making authority and does not fund research project awards. The role of the Working Group is to identify shared areas of interest and challenges to advance ME/CFS research by providing NIH Institutes, Centers, and Offices with evidence-based rationale for supporting ME/CFS research and for attracting investigators to study this complex illness. In addition, the Working Group works to leverage resources across NIH, such as personnel, equipment, methodology, supplies, and collaborative expert networks.

NIH has 27 Institutes and Centers that support and conduct research for a broad range of diseases and conditions.The Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) provides a list of many but not all diseases and conditions that NIH funds. The NIH-Wide Strategic Plan provides a good overview of the science that NIH supports. Additionally, most NIH Institutes and Centers have strategic plans that define many of the areas of research that they support in line with their missions.

At NIH, the research and activities related to ME/CFS are coordinated through the Trans-NIH Mylagic Encephalomyelits/Chronic Fatigue Syndrome Working Group. The National Institute of Neurological Disorders and Stroke (NINDS) serves as the lead for the Trans-NIH working group.

The U.S. Department of Health and Human Services, Office of the Secretary, provides advice and recommendations to the Secretary of Health and Human Services on issues related to ME/CFS through the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

The CFSAC:

• Provides a central means for the exchange of information across relevant HHS agencies on the current state of knowledge and research on ME/CFS;
• Assesses the impact and implications of current and proposed diagnosis and treatments for ME/CFS;
• Evaluates the development and implementation of programs to inform the public, health care professionals, and academic and research communities about ME/CFS advances;
• Partners to improve the quality of life for affected individuals.

Vicky Holets Whittemore, Ph.D, co-chair of the Trans-NIH ME/CFS Working Group, serves as the NIH ex officio member of the CFSAC and disseminates information about NIH activities and research related to ME/CFS to the committee.

Yes. A list of clinical studies and trials supported by NIH can be found on ClinicalTrials.gov. Put Chronic Fatigue Syndrome in the search term and select NIH as the funding organization to identify clinical studies and trials on ME/CFS that NIH supports.

Clinicaltrials.gov is a comprehensive registry and database with detailed information on publicly and privately supported clinical studies worldwide. The site allows users to search clinical trials by disease area, geographical location of clinical trials, and whether clinical trials are currently recruiting volunteers. Clinical trials recruit healthy subjects and subjects with specific conditions; everyone can make a contribution to medical research by participating in a clinical trial.

This laboratory-based study evaluated whether the presence of XMRV/MLV nucleic acids or antibodies in the blood is associated with ME/CFS. The original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in the blood of research participants with this disorder reported that this association is not confirmed in a blinded analysis of samples from rigorously characterized research participants. To conduct the study, researchers working with clinicians in six regions across the United States compared blood and plasma samples from individuals diagnosed with ME/CFS to samples from healthy people. Individuals with ME/CFS were matched to healthy counterparts in similar age, sex, and geographical demographics. The results from this study have been published in the journal, mBio and are available at the following link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448165/pdf/mBio.00266-12.pdf