Tag: #MEAction

Voices from Sacramento: Janet Dafoe and Ashley Haugen

Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.

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Europe gears up for its third #MillionsMissing Day of Action

Europe is gearing up for its third #MillionsMissing Day of Action set for May 12th, which is the international day of awareness for Myalgic Encephalomyelitis (ME).   Organizers from #MillionsMissing groups across Europe are working together to share ideas and prepare for their awareness events in Norway, Belgium, Germany, the Netherlands, France, Denmark, Iceland, Spain,

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US: Read Terri Wilder's CFSAC Testimony

  The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017.  #MEAction activist, Terri Wilder, spoke during the comment period at

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ME/CFS Advocacy Down Under in 2016

2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.

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Winners of the #MillionsMissing Art competition

We’re excited to announce the winners of the #MillionsMissing Art competition. 1st prize went to CJ Janzen from Cambridge, Ontario who made two amazing songs about ME. Listen here: Myalgic Encephalomyelitis Song – Rough by CJ Janzen | Free Listening on SoundCloud A Song For M.E. by CJ Janzen | Free Listening on SoundCloud 2nd

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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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#MillionsMissing Holland gets the ear of the Minister of Health

#MillionsMissing Holland has made its voice heard in the House of Representatives.   House of Representatives member Linda Voortman has filed questions about ME based on the protest demands with Holland’s Minister of Health, Welfare and Sport, Edith Schippers. In the letter, Voortman asks the minister of health if she is willing to provide more

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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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Shorter invited to NIH to share perspective of disease denialism

On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the NIH by the historian Dr. Edward Shorter titled “Chronic Fatigue Syndrome in Historical Perspective.” Dr. Shorter has a long history of treating patients with ME with disdain and denial, as illustrated in an article he wrote for

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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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