In the British media, ME activists who have opposed cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are often been portrayed as an unreasonable, militant “minority.” Members of the #MEAction Science and Treatment Policy and Media Working Groups have drafted this fact sheet to explain the real reasons why ME patients are opposed to CBT and
It’s been an amazing year in ME advocacy. In countries all around the world, patients are rising up with a new energy (if that’s the right word!) of creativity and collaboration. There is a growing sense that we are living in a moment that is bigger than any one advocate or organization. That we are at the
OPINION PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is. The only possible mitigation of this flaw would be if: 1. There were no acceptable alternatives to a subjective primary
Given the weak and flawed methodologies of the PACE trial, which claims that CBT and GET led to the recovery of ME/CFS patients, we, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies: – call upon The Lancet to retract the claim made in its February 2011 editorial [1] that 30% of
We’d love to start hosting periodic calls to allow #MEAction members to chat informally with co-founders Jen Brea and Beth Mazur – to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. As we use Google Hangout for these calls, they are strictly limited to eight participants in addition
The Solve ME/CFS Initiative has launched a campaign to help increase awareness of —and ultimately research funding for—ME/CFS. The campaign, “Humans of ME/CFS,” is a takeoff of the popular “Humans of New York” photoblog and Facebook page. The aim of the campaign is to show the faces and stories of those suffering from ME/CFS worldwide
We’re proud to announce that our new partnership with Tugg is now LIVE! Tugg is a “theatrical-on-demand” platform that gives documentary fanbases like ours access to 90% of the movie theaters in the United States. Tugg helps you book a movie theater near your home, advertise, sell tickets, and stage a high-caliber screening to build
The ALS Ice Bucket Challenge raised more than $100 million, which resulted in a research breakthrough.
DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.
Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know, the price of Ampligen is set to dramatically increase. Two patients I spoke with today said the price would more than double from $75 a vial to $200 per bottle. At their current dosages, that would raise the
