Information about participating in medical research from the U.S. Department of Health and Human Services

The U.S. Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) works to protect the rights and welfare of participants in research conducted or supported by HHS. An important part of protecting research participants is helping them understand research and how participating might affect them so that they can make an […]

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How Doctor-Delayed and Missed Diagnoses Harm Patients With Chronic and Rare Illnesses

Originally published  by Sydney Reed in The Mighty February 3, 2020 It was Christmas Eve in 2010 when I was hospitalized and diagnosed with juvenile dermatomyositis (JDM), a rare autoimmune disease that affects approximately 5,000 children and adolescents in the United States. During my impromptu holiday sojourn, I remember tinsel hanging from the door of the hospital room and […]

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Stunning Findings of New Pediatric ME/CFS Prevalence Study

7-Year Pediatric ME/CFS Prevalence Study Publishes Stunning Findings Last week, the journal Child & Youth Care Forum published the results of a seven-year ME/CFS prevalence study that screened more than 10,000 children and teenagers in the Chicago area. The study, co-led by Dr. Leonard Jason and Dr. Ben Z. Katz, was a partnership between DePaul University […]

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Study Finds Many Youth Living with Undiagnosed Chronic Fatigue Syndrome

Researchers from DePaul University and Lurie Children’s Hospital screen 10K children, teens in NIH-funded study Originally appeared January 23, 2020 in DePaul University Newsroom CHICAGO — Most youth living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have not been diagnosed, according to a new prevalence study from researchers at DePaul University and Ann & Robert H. Lurie Children’s […]

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2019 Congressional Champions of ME/CFS

The following is a list of our Congressional Champions who supported ME Research and Funding. In order to increase funding for ME/CFS research and education, we had TWO appropriations request letters: DEFENSE & LABOR-HHS. Labor-HHS Appropriations: Preserved $5.4 million for 2020 to fund the Multi-site Clinical Assessment of ME/CFS (which recently expanded into pediatric study) and […]

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Victory! Six Major Federal Wins for ME/CFS

Dear Friends, Throughout 2019, I reported on our advocacy gains for ME/CFS. Thank you for standing with me and our advocacy partners during a particularly turbulent year while we fought for ME/CFS in Washington D.C. Today, with this final FY20 budget update, I’m so happy to report that our tenacity paid off! We achieved unprecedented, […]

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In Memory of Cindy Siegel (Shepler)

Cindy Siegel (Shepler) lived and loved her new life in the City by the Bay and relentlessly pursued medical answers while there. By 1993, in her mid-30s, the lack of adequate treatment forced her to leave a successful life and career in the healthcare industry and return to her hometown of Knoxville.  Please be aware […]

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Postdoctoral Fellow Needed Neuroimaging Projects

Human Neuroimaging Postdoctoral Fellow Neuroinflammation, Pain and Fatigue Laboratory University of Alabama at Birmingham A postdoctoral fellowship position has become available to work on funded ME/CFS neuroimaging projects with Dr. Jarred Younger at the Neuroinflammation, Pain and Fatigue Laboratory; University of Alabama at Birmingham. Position Summary: The Neuroinflammation, Pain and Fatigue Laboratory, under the direction […]

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“The Biology of ME/CFS: Emerging Models” with Anthony L. Komaroff, M.D.

Transcript and audio recording now available for the September 2019 ME/CFS CDC conference call with Anthony L. Komaroff, M.D. Previously recorded, September 16, 2019 CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder Engagement and Communication (MECFS-SEC) Click Transcripts to read more. Click Audio to listen to the full meeting. Note: THE CDC CFS Patient-Centered Outreach and Communication Activity (PCOCA) has […]

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