Category Archives: Policy

David Tuller: "I am committed to seeing this effort through to the end"

Tuller on PACE Investigation Plans: Not Beholden to Anyone

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#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work ...

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

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One of my deeply held personal values is that ALL people must be treated  respectfully…I have found that respectful, highly knowledgeable, forceful advocacy language that expresses the desperate needs of our community is the most effective. But please do not mistake my professional, respectful demeanor as anything less than a ...

Thank Senator Markey for Sponsoring the Congressional ME Briefing

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Back in February 2017, Senator Ed Markey (D-MA)  publicly announced at a packed town hall meeting that he would advocate for ME. A few short months later, he did just that! His first act as an ME advocate was to sponsor a Congressional Briefing on Capitol Hill on May 18th ...

City Proclamation for ME: How-To Guide and Case Study

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Timbre Livesay and Mary Dimmock contributed to this article. This is an outline of the steps a California ME advocate, Mark Camenzind, took for getting city proclamations for ME. Below the steps is a template you can use for your own city proclamation. Feel free to adapt either for your city's ...

State Resolution for ME: How-to Guide and Case Study

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Rivka Solomon and Mary Dimmock contributed to this article This document includes the steps ME advocates are taking to get a State Resolution for ME passed in their State House (aka State Assembly or State Legislature). It also includes a draft template of a resolution for you to use in your state. Why ...

Impact of proposed NIH and CDC cuts on ME Research

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How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease ...

Thank Senator Markey for promising to help ME patients

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On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed Markey (D-MA). Around 1,400 constituents were present in both the main auditorium and the overflow room where the event was live streamed. I was one of the few who got to ...

US: Family testifies about CDC’s harmful recommendations at CFSAC

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A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report ...

US: Read Terri Wilder’s CFSAC Testimony

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  The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017.  #MEAction activist, Terri Wilder, spoke during the ...

Funding for U.S. research centers falls way short

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Government funding for research centers and a data management center for ME/CFS has been made public, and the amount of funding allocated is infuriatingly small. The National Institute of Health (NIH) plans to issue two Requests for Application (RFAs) in January to fund 2-3 collaborative research centers and a data management ...
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