Author: Adriane Tillman

Inquest Rules Merryn Crofts Died Due to Severe ME

An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic Encephalomyelitis (ME) –  making her the second person in the U.K to have ME listed on a death certificate. Merryn weighed less than six stone (84 pounds) at the time of her death, and had spent

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The Power of the Shoe

    Shoes have been a powerful, unifying symbol for #MillionsMissing since the first global protest in 2016. Demonstrations across the world have displayed rows of shoes to represent what people are missing from their lives due to myalgic encephalomyelitis. The haunting image of rows of shoes symbolizing the effect of this disease on people’s

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Reanalysis of PACE Trial Shows GET and CBT are Ineffective

What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of relaxing the criteria for “recovery” as the trial progressed? Researchers have just published a paper seeking to answer this question in a reanalysis of the PACE trial based on its original protocol. The authors concluded that

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The First Draft of the Common Data Elements for ME/CFS is Ready for Review

The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National Institute of Neurological Disorders and Stroke (NINDS). Read the first draft of the Common Data Elements for ME/CFS here. The purpose of the CDE Project is to standardize the collection of investigational data in order to facilitate

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UC Berkeley will Host Unrest Screening

Calling all people in the Bay Area – and beyond, You are invited to attend a screening of the Oscar-nominated documentary, Unrest, hosted by UC Berkeley’s School of Public Health on Feb. 20th. Register for the FREE event today. Please take this opportunity to invite your Congressional and State representatives to educate them about Myalgic Encephalomyelitis. You have extra

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The public testifies about ME

Dozens of people with Myalgic Encephalomyelitis and family members testified about the disease last December before the government agency responsible for advising Health and Human Services on ME/CFS – the Chronic Fatigue Syndrome Advisory Committee. Speaker after speaker testified about the incredible neglect from the government for the millions of Americans suffering for decades without adequate

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U.S. Advisory Committee Holds Meeting on ME/CFS

We need you! #MEAction is looking for volunteers who can help our team ensure that the CFSAC recommendations are implemented, and don’t fall through the bureaucratic cracks. If you’ve worked for government agencies before, that is a bonus. We welcome all volunteers who can assist with keeping an eye on the work of this important

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