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Volunteer of the Month – A Source of Inspiration and Wisdom

Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and reach higher. She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ME. Most recently, she

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All I want for Christmas is #ScienceNotStigma

This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff

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Advocacy Round-up – A Season of Protest and Petition

The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to

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Sept & Oct — Research Roundup

The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn’t much time to devote to breaking down the science.  If you’d like to see a quick run-down of what’s been going on lately

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UK: MPs fight for a crucial parliamentary debate on ME

Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME

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Australia: Macquarie University Study will look for Hypochondria and Somatic Symptoms in CFS, Fibro and MCS

Macquarie University are recruiting people with chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity for a study measuring somatic symptoms, hypochondria, anxiety and depression, catastophising and co-morbid diseases.  The study was approved by the University’s ethics department. Psychiatrists at Macquarie University in Sydney sought 1,000 people for the one-year longitudinal study. The study

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Beauty Sleeping: A Real Life Fairytale

Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn’t bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and she was beautiful fixing a

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Westminster Hall debate could be a 'turning of the tide' for ME

Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME.  MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey

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Read 'Invest in ME's' Parliamentary Briefing

UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for £20 million in funding for biomedical research for five years. The briefing also provides an excellent summary of the disease and the challenges patients face accessing appropriate care.   [maxbutton id=”16″ url=”http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf” text=”Read the briefing” ]

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