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CFS Advisory Committee Meets

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.

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AIDS activist with ME speaks at CFSAC

An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government health bodies for repeating AIDS history by “doing nothing” for millions of ME patients. Terri Wilder, from New York, provided testimony at the CFS Advisory Committee (CFSAC) meeting on 18 May. Terri stated that her testimony

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A personal appeal by Holly L.

Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture. Its mate is missing, as is so much of my former life. I got all teary-eyed and found myself just touching the shoe ,and as my fingers ran over the sides my memories came flooding back.

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CFSAC May 17-18 meetings to be livestreamed

The spring meeting of the US CFS Advisory Committee (CFSAC) will take place on Tuesday May 17 and Wednesday May 18 from noon to 5pm (Eastern Time) and will be both livestreamed and available to listen to by telephone. The committee provides advice and recommendations to the Secretary of Health and Human Services (HHS) on

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Send this personal appeal to healthy volunteers

Hi, everyone!  This is more of an opinion piece, though it does have to do with #MillionsMissing. As you might imagine, we will really need healthy people to come out and support us: to help with setup and cleanup; to hand out water and food; and to raise their voices alongside our own.  I wrote

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Online TV show to discuss ME/CFS Centers of Excellence

Dr Kenneth J. Friedman will discuss the CFS Advisory Committee’s (CFSAC’s) upcoming proposal for ME/CFS Centers of Excellence and will explain what patients can do to make such centers a reality, in an online TV panel show on May 12. The one-hour show, which covers ME/CFS and Lyme Disease, will be broadcast on Channel 17

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Fundraiser: #MillionsMissing needs your help!

On May 25, 2016, #MEAction is sponsoring a community-organized protest at Departments of Health and Human Services (HHS) across the country, and in cities all over the world. As a community, we are bowled over by the response.  The protest started as a single effort in Washington, D.C., but as of today there will be

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#MillionsMissing announces US protest demands

ANNOUNCING MEETING ABOUT THE DEMANDS These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into a national, multi-city protest. With that in mind, we will have an open community meeting on Wed. May 11th, 2 pm EDT to discuss the demands and hear any questions or

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