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#MillionsMissing Protest in 12 Locations all Over the World

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On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global day of action to demand equal treatment and an end to the stigma of the diagnosis of ME/CFS. Protesters demonstrated in front of Department of Health and Human Services offices in Washington ...
D.C. Three Fierce Women

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 ...

Ron Davis

Speeches from the Front Lines of #MillionsMissing: Ron Davis

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I’m Ron Davis and my son is missing... Linda Tannenbaum has really helped us a lot in raising funding. We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research.  And we are making progress. Now, it ...

Videocast of Trans-NIH group’s ME/CFS proposals at 2pm today

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The US Trans-NIH (National Institutes of Health) ME/CFS Working Group will present its proposal to advance research into the disease during a live webcast at 2pm (Eastern Time) on Thursday 26 May. The broadcast will take place from a meeting of the National Advisory Neurological Disorders and Stroke Council. In order ...

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 ...

Swedish Government “no interest at all” in ME/CFS

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A member of a Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease. In an interview with British ME/CFS fundraiser Mike Harley, the member said, “The government appear to take no interest at all in this disease, which means that there isn't any serious commitment, no sense of ...

AIDS activist with ME speaks at CFSAC

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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 ...

A personal appeal by Holly L.

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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 ...