Category: United States

Listen to Jarred Younger's CDC conference call this Thursday

The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments

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Take the #MEAction NIH research priorities survey!

Recently, the US National Institutes of Health (NIH) put out an RFI – a ‘request for information’ – asking patients and patient advocates to tell the Trans-NIH Working Group on ME/CFS what kind of opportunities there are for studying the illness, what technologies and tests might be utilized in studying it, and what challenges ME/CFS

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Top Medical Schools Teach Little about ME/CFS

Based on information from four medical schools, medical schools rarely address ME/CFS in basic instruction or as case studies. The University of North Carolina School of Medicine is ranked second in primary care in the 2017 U.S. News and World Report. Kurt Gilliland, PhD, is its assistant director of curriculum and evaluation.  When interviewed, he

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#MillionsMissing Meets With Government Officials

In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands:  better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker

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Respond to the NIH's Request for Information

On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.”  The Trans-NIH ME/CFS Working Group

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Speeches from the front lines of #MillionsMissing: Carol Head

I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum.  Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers. Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are

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#MillionsMissing in the News

The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week.  London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,

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Whittemore presents ME/CFS proposal to NIH, May 26, 2016

Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our appropriated funds, sort of open to all things within our mission, and if we decided to a priori say we’re going to set aside a pot of money for some particular topic, then we need to

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#MillionsMissing Protest in 12 Locations all Over the World

On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global day of action to demand equal treatment and an end to the stigma of the diagnosis of ME/CFS. Protesters demonstrated in front of Department of Health and Human Services offices in Washington D.C., Atlanta, Boston, Dallas,

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