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  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
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
John Oliver, please talk about ME/CFS Funding! Please sign up/login to HBO’s “Last Week with John Oliver” page to “like” and comment on the topic idea of funding for ME/CFS: Ask John Oliver to talk about ME/CFS Funding! For those of you not familiar with “Last Week Tonight with John Oliver” – it has become
Write “M.E.” on your left hand or forearm (if you do not want to use marker on your skin, you can improvise with a piece of paper as many have done). Cover your mouth with your hand and make sure to look into your camera lens. Upload to Twitter or Instagram with the hashtags: #sufferingthesilence #MEAction and #severeme. If you are on Facebook, you will need to post to The #MEAction Network page AND use the hashtags above.