Tag: United States government

Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them

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US: Attend the #MillionsMissing USA call this Sunday!

This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters.  Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the

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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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Join the #MillionsMissing this Sept — Bigger. Louder. Stronger.

On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS. We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland.  Impromptu shoe displays

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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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#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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Speeches from the Front Lines of #MillionsMissing: Terri Wilder

My name is Terri Wilder and I’m a person living with ME. I was only diagnosed with ME about twelve weeks ago so it feels a little strange for me to be here today and introduce myself this way…… I typically introduce myself this way: “Good Afternoon, I’m Terri Wilder. I’m an AIDS Activist and a

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