Author: Jaime S

Research: supporting advocacy orgs yields huge payoffs

This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: “This article explores their effects on federal medical research priority-setting.

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Sept & Oct — Research Roundup

The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science.  If you’d like to see a quick run-down of what’s been going on lately

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Join the fight against stigma and pseudoscience in New York

This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center — and they invited Per Fink to speak.  If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young woman with ME.   [pullquote

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#MEAction Sends Recommendations to CDC to Update its ME Website

This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, some sections of the site

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HHS Secretary Kills CFSAC!

If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good morning, I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has

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August 2018 — Research Roundup

August was a mixed month in the world of ME research, with some truly innovative studies coming out and a few that needed another couple of rounds with the thesis advisor.  Some great books and book chapters debuted — and we faced Afflicted, battling not only the usual stigma, but the directors’ framing of chronically ill patients

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Enrolling: Cornell Exercise Testing Study

Who: Cornell Center for Enervating Neuroimmune Disease What: The Center is collecting information from both ME patients and sedentary controls. You will first have a quick phone call to determine eligibility. If eligible, you will meet with a doctor (theirs or yours) to be examined or for blood and urine tests. Then you will complete questionnaires. Finally, you

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July 2018 — Research Roundup

July was a big month for scientific research in ME!  Many of the most well-known researchers and clinicians had papers this month including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, Julie Newton, Broderick, and Marshall-Gradisnik.  There were studies in epigenetics, NK cell function, the HPA axis, robots for schoolchildren with ME, and a few interesting critiques

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CDC Revises Its Information on ME

Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink. In September 2016, I attended a meeting at the Centers for

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Open Medicine Foundation Announces Harvard Collaborative Research Center

Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars. The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center. There are two main goals

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