Tag: advocacy

US: Read Lily Chu's CFSAC Testimony

Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.

Read More »

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.

Read More »

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

Read More »

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

Read More »

Canada: Find CIHR qualified grant reviewers!

When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision.  But what happens when those ‘experts’ deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada’s CIHR (Canadian Institutes of Health Research) to study ME/CFS,

Read More »

Donate to Karina's Legal Fund

Over the past several years, many of us with and without ME have looked on in horror as Karina Hansen was forcibly removed from her home and institutionalized.  This was in part due to Denmark’s decision to rename myalgic encephalomyelitis “bodily distress syndrome” and classify it as a psychological illness. The Hansens’ fight to regain

Read More »

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!

Read More »

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

Read More »
Scroll to Top