Tag: awareness

Update: the ongoing work of #MillionsMissing

  Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May –  and in 25 cities in September – to protest their government’s neglect of people with ME. While the posters are now stored away, activism has continued behind the scenes in follow-up

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Carol Head Named 2017 Oprah Magazine Health Hero

Carol Head has just been honored by O, Oprah Winfrey’s magazine, as one of fourteen 2017 Health Heroes, “visionaries who are healing bodies, minds, and communities.” “Although we would have preferred a more substantive piece (and inclusion of “myalgic encephalomyelitis,” or ME, as our disease name),” Solve ME/CFS said in a statement yesterday, “we are

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Australian university must not ignore evidence-based science

Australia’s UNSW is trialling an education module treating chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm. Sign the petition!

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Jen Brea's 'Unrest' to Debut at Sundance Film Festival

After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for its debut.  The film will be shown at the Sundance Resort as part of the Sundance Film Festival in January 2017; Brea’s Unrest was selected to premier as one of the Festival’s narrative documentaries.  The Sundance

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#MEAction US protest demands

These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care.   You can access and download a pdf of the revised protest demands by clicking

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Take Lenny Jason's survey on emotional impact of having ME

Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer.  Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation

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Thoughts on NIH speakers from Dr. Zaher Nahle

It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…

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Watch the Bateman Horne Center Meeting Livestream

Lucinda Bateman, MD, BHC Founder and Medical Director, is engaged in thought leadership discussions on ME/CFS and FM across the globe, traveling to several conferences in Oct. At this meeting she will will recap the information, insights, progress and promise.

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#MillionsMissing Crafts Competition

#MillionsMissing Crafts Competition We want to have fun while we work for equal treatment for ME sufferers! Win prizes! Submit photos and pattern of a crochet – or knitting project with the #MillionMissing logo. ( Also with a picture of the finished product). We pick three winners receiving a prize and they will be the designers behind #Millionsmissingnorway ‘s official patterns.

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