Trans-NIH ME/CFS Working Group Telebriefing

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on March 17, 2020, 11:00 am until 12:00 pm ET.Our guest speaker will be Leonard Jason, Ph.D., director of the Center for Community Research at DePaul University. Please use the following dial-in information […]

Read More

Solve M.E. Travel Awards – Applications Due February 21, 2020!

Thanks to the 1,500 Year-End Gift Challenge, Solve ME/CFS Initiative (Solve M.E.) is pleased to make available a *LIMITED* number of travel awards. Travel stipends of up to $500 will be awarded for individuals or organizations wishing to participate in-person in Washington D.C. The inaugural 2020 Community Advisory Council will participate in a blind peer review process to […]

Read More

Meet the new members of the Solve M.E. Community Advisory Council

2020-2022 Community Advisory Council Announced Solve M.E. is pleased to announce the inaugural 2020-2022 class of the Community Advisory Council (CAC). Due to overwhelming response to the call for nominations, the CAC has been expanded to 14 members. The Solve M.E. Community Advisory Council (CAC) is a volunteer working group providing guidance and recommendations on […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More

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, […]

Read More

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 […]

Read More