Bedfest - May 6, 2017

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Proclaim it Loud: States Issue Resolutions for ME

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Government moves slow. Any action requires lengthy processes - all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges facing ME, including ...

#MillionsMissing Will Take to the Streets on May 12th – Join Them!

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The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once again demand change for people with Myalgic Encephalomyelitis (ME). Five cities in the UK are hosting #MillionsMissing rallies - with London taking a stance before the department of health for the third ...

Eleven Years with Severe ME – a Young Woman Writes Her Story

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Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her "forgotten years" of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move ...

The ME/CFS Biomarker Rollercoaster

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Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression or progress and help inform which treatments might help. The need for biomarkers is immense and researchers will identify many possible ones. It is encouraging that there have been more possible biomarker reports ...

Thirty U.S. House Reps Show Support for Appropriation Language

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Thirty U.S. House representatives signed a letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the NIH, CDC and HHS to accelerate and enhance its work in research and education for ME/CFS ...

The Sleepy Girl Guide to Social Security Disability (U.S.)

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Renegade disability guide for Myalgic Encephalomyelitis ...

Engaging People with ME as Partners in the CRCs

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The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in ...

Musician with ME produces EP from her bed

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#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community.   Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these ...