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Category Tag: HHS

Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.

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There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies to provide fair and adequate treatment to people with myalgic encephalomyelitis (ME). Together, our community continues to take action to fight for our lives, and we’re seeing the fruits of that ...

It has been an Intense Week!

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It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind – we've never been busier! It's been a week of advancing the cause of health equality for people with myalgic encephalomyelitis through the launch of the Unrest continuing medical education program and the expansion of our US ...

#MEAction Sends Letter to HHS Demanding New Federal Committee on ME

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Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human Services (HHS) that it had NOT accomplished its job when it suddenly dissolved the federal advisory committee - known as CFSAC - that makes recommendations on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), ...

How To Protest HHS with #MEAction

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We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday. We will reschedule the Washington, D.C. protest for a later date ...

HHS Secretary Kills CFSAC!

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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 ...

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 ...

#MillionsMissing Meets With Government Officials

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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 ...

Speeches from the Front Lines of #MillionsMissing: Terri Wilder

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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 ...

Act now! Our #MillionsMissing Round-Up

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Hello, everyone! It's only three days until the #MillionsMissing protest, so it's time to review what's gone on so far, and discuss what you can do to help ensure we are heard by our governments! Locations: So, your protest has gone out into the world and is now in a dozen different ...

CFS Advisory Committee Meets

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The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time ...