Category Archives: Policy

Ed Markey, Senator from Massachusetts

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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US: Read Lily Chu’s CFSAC Testimony

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Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public ...
Australia-Word-Cloud

ME/CFS Advocacy Down Under in 2016

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2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016 ...

Update: the ongoing work of #MillionsMissing

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  Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May -  and in 25 cities in September - to protest their government's neglect of people with ME. While the posters are now stored away, activism has continued behind ...
21st-Century-Cures

21st Century Cures Act Passes House with Overwhelming Bipartisan Support

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21st Century Cures Act Passes House with Overwhelming Bipartisan Support ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a ...

#MillionMissing Activists Meet with HHS for Follow-Up

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As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1, Assistant Secretary of Health Dr. Karen DeSalvo had committed to follow up on specific actions and meet again in October. On October 24, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and ...
Red MEAction

#MEAction US protest demands

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These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the ...
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