SearchMECFS

searchMECFS is an online interactive query tool for searching the biospecimens available for research purposes from studies of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).¹ The tool allows researchers to identify biospecimens of interest based on the clinical characteristics of study participants.

About

searchMECFS currently hosts clinical and biospecimen data from both the Chronic Fatigue Initiative (CFI) and the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Study (MCAM).

The CFI study, originally funded by the Hutchins Family Foundation, supported research into the underlying infectious, immunological, and toxicological causes of ME/CFS. The CFI study enrolled 203 participants with ME/CFS and 202 healthy controls from five geographically diverse clinical sites across the United States.

The MCAM study is supported by the Centers for Disease Control and Prevention. It was conducted between 2012 and 2020 at seven ME/CFS specialty clinical sites across the United States. The data from clinical assessments and biospecimens are available for 459 individuals with ME/CFS and 343 healthy controls.

Many variables are available on searchMECFS for both studies, including participant demographics, patient-reported outcomes, quality of life measurements, mental health and pain characteristics, and fatigue-specific measures. Additionally, several types of biospecimens are available to request, including DNA, plasma, and saliva samples.

Aims

searchMECFS aims to help ME/CFS researchers discover new insights about ME/CFS etiology by supporting research that will utilize existing biospecimens. The searchMECFS website is a tool designed to streamline the biospecimen selection process based on study participants’ phenotypic and clinical attributes, enabling researchers to determine biospecimen availability prior to formally requesting samples.

Registration and Access

The searchMECFS query tool is intended for researchers who want to request biospecimens for research purposes only. Researchers must comply with the Data Use Agreement (DUA). New users must submit the registration form, including a brief description of how they would like to use the biospecimen search tool, and agree to the searchMECFS DUA terms. When the registration is approved, the researcher will have full access to the tool.

Requesting Biospecimens

Investigators with an approved searchMECFS account may conduct queries to determine the availability of biospecimens that meet their ME/CFS research requirements. Researchers can then apply for the biospecimens of interest using the National Institute of Neurological Disorders and Stroke (NINDS) biospecimen online submission webform. The request will be reviewed by the Biospecimen Resource Access Committee (BRAC) to ensure the appropriateness of the request. Once approved, a meeting will be scheduled with the applicant to finalize the biospecimen list and discuss logistics. The meeting will include representatives from the searchMECFS team, NINDS, and the appropriate biorepository team, with BioSEND managing CFI specimens and the CDC managing MCAM specimens.

Data Privacy

Participant privacy is a top priority of searchMECFS and is covered extensively within the searchMECFS DUA. All data released on searchMECFS are free of both Protected Health Information and personally identifiable information. The DUA covers responsible data use including refraining from attempting to identify participants, safeguards against unintentional disclosure, and prompt reporting of any unauthorized use.

Related Articles and Presentation

Data and specimen-sharing tools offer new discovery opportunities for ME/CFS researchers | Open Access Government

How can data management tools help us discover new treatments for a chronic disease? | Futurum

NIH Launches Digital Platforms for Chronic Fatigue Syndrome Research | Genetic Engineering & Biotechnology News

Funding and Support

Five NIH Institutes and Centers—National Center for Complementary and Integrative Health, National Heart, Lung, and Blood Institute, National Institute of Allergy and Infectious Diseases, NINDS, and National Institute on Alcohol Abuse and Alcoholism—provide funding for searchMECFS through grant U24-NS-105535 to RTI International, the DMCC for the ME/CFS Research Network. RTI International is responsible for the design and development of searchMECFS.

Contact Information

RTI is the DMCC for the ME/CFS Research Network and is responsible for this website’s design and development. If you have any questions, please contact RTI at searchMECFS@rti.org.

Learn More

https://searchmecfs.org

References

1.About - searchMECFS. Accessed October 30, 2024. https://searchmecfs.org/Home/About

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

etiology The cause of origin, especially of a disease.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

See National Institutes of Health.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.