Donate to help SMCI receive a $50K Challenge Donation by Dec 1!
November 30, 2015
No Comments
Help SMCI meet our challenge to receive $50,000 by making a Giving Tuesday donation.
Author: #MEAction
Join an #MEAction Group
November 29, 2015
1 Comment
Announcing #MEAction groups We are thrilled to formally announce a new feature we’ve had running in the background these last few months: #MEAction groups. As many of you know, Beth and I have been deeply inspired by the legacy of ACT UP and its grassroots ethos. Decisions were made democratically but decisively in large group meetings,
#MEAction Google Hangout: Australia
November 25, 2015
1 Comment
This is the fifth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur to meet other activists “face to face.” It’s an opportunity to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. We’d love this call to especially focus on connecting with
Petition: Investigate PACE, remove CBT and GET from treatment guidelines
November 24, 2015
4 Comments
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed. The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US
New Zealander's: Provide feedback to the Ministry of Health
November 24, 2015
1 Comment
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy. Let’s ensure the ME/CFS community is heard – express your views on the forum now! https://futuredirection.health.govt.nz/join-the-discussion/people-powered/are-there-health-services-geared-your-needs-and-lifestyle What you can do The MoH is asking: “are there health services geared towards your needs and lifestyle?”. This is a
#MEAction Google Hangout: Ireland
November 23, 2015
No Comments
This is the fourth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur to meet other activists “face to face.” It’s an opportunity to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. We’d love this call to especially focus on connecting with
James Coyne declares “moral equivalent of war” on PACE
November 18, 2015
10 Comments
James Coyne gives a public talk on PACE Trial In a public talk in Edinburgh on Monday, psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media. The authors of
Poll: Letter to thank NIH for Announcement
November 17, 2015
4 Comments
November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness
Call for HHS to Investigate PACE
November 16, 2015
No Comments
Call for HHS to Investigate PACE Recently, journalist David Tuller, DrPH, published an investigative report outlining serious concerns with the conduct, analyses, and results of U.K.’s £5 million PACE trial for chronic fatigue syndrome. PACE investigated the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) Since then, other researchers and journalists have
Scientists demand independent analysis of PACE trial
November 13, 2015
1 Comment
Virology Blog today published an open letter from six leading scientists calling on The Lancet to seek an independent re-analysis of data from the controversial PACE trial. The Lancet published the first PACE trial paper in 2011, which examined psychological and exercise therapies aimed at getting chronic fatigue syndrome patients more active and was based