Category: United States

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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Speeches from the Front Lines of #MillionsMissing: Ron Davis

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 is very

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

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 to be funded, proposals

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Act now! Our #MillionsMissing Round-Up

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 locations. Locations now

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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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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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UK ME/CFS Biobank opens for business

Dr Charles Shepherd of the ME Association has announced that the UK’s ME/CFS Biobank is now ready to send blood samples to researchers anywhere in the world. The biobank is run by a team headed by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine and forms part of the main University

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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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IACFS/ME conference to include Koroshetz and Fluge

This year’s conference of the International Association for CFS/ME (IACFS/ME) in Fort Lauderdale, Florida on 27–30 October will include speeches by Dr. Walter Koroshetz and Dr. Øystein Fluge. Dr Koroshetz, who is Director of the National Institute of Neurological Disorders and Stroke and head of the Trans-NIH ME/CFS Working Group, will give the conference’s keynote

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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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