Category: Awareness

How Much Does the UK Dept. of Health Spend on ME?

MP Carol Monaghan (Glasgow North West) had asked the UK Secretary of State for Health and Social Care how much it plans to allocate to biomedical research for Myalgic Encephalomyelitis in the current financial year?  In quotations below is the response from the Minister of State at the Department of Health and Social Care, Caroline Dinenage. Her response only references past spending,

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Victory for #MEAction NY Activists: State Publishes Webpage about ME

The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)

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Sign the Scottish Petition for ME – anyone can sign

    Please support our petition! #MEAction Scotland volunteers have submitted a petition to the Scottish Parliament. Anyone from any country can sign! The petition calls on the Scottish Government to undertake a review of the treatment of people with ME in Scotland. The aims of the petition can be summarised as follows: Investment in

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Why we’re Targeting the NIH for #MillionsMissing

    The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29

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A song for ME: Blowin’ in the Wind

    The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people with ME, is performed by patients and their carers from around the world: If you would like to play and/or sing this song at a #MillionsMissing protest on 12 May, or at any other event, please use

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A Tribute to Mag Friel

I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”

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Activism Update from NY – Reaching Out to LGBTQ Community

  Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out to the New York LGBTQ community to educate them about ME and build allies. Terri Wilder, Gabriel San Emeterio and Kristina Osobka went to The Center in NYC, where they met with the organization’s executive director

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