Dear #MEAction users, Please find below a letter to HHS (CDC and AHRQ) calling on them to investigate the PACE trial and take whatever steps are needed to protect patients. This includes revising the AHRQ Evidence Review and CDC clinical guidelines to remove recommendations such as cognitive behavior therapy (CBT) and graded exercise (GET) that are based on
The Information Commissioner’s Office (ICO) has ordered Queen Mary University of London to release anonymized PACE trial data to an unnamed complainant. Queen Mary has 28 days to appeal the decision. The report outlines the scope of the data requested, Queen Mary’s arguments for refusing to release the data and the Commissioner’s justification for siding with the patient requesting the
This is the second 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 activists
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
Use this code to add a PACE petition counter to your blog or website. It links back to the original petition and is a great way satisfy your PACE petition mania from the comfort of wherever on the internet you call home: You’ll need to format the font, colors, etc. to suit your tastes. Here’s what
Editor’s note – this is an emerging news story. Edits will continue to be made to this page as we receive more details. The National Institutes of Health (NIH) announced today that it will undertake a new clinical study and “reinvigorate” the long-standing trans-NIH working group to further ME/CFS research, an effort to be led by the
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
In wake of David Tuller’s investigation, PACE investigators publish follow up study Last week, journalist David Tuller published a four-part investigative piece on the 2011 PACE trial, a £5 million (US$8 million) non-blind study of cognitive behavioral therapy (CBT) and graded exercise (GET) as treatment for chronic fatigue syndrome. In his piece, Tuller quotes top
Editor’s note: Michael Evison of ME Alliance has written this letter to the Danish prime minister about Karina Hansen’s case and is asking for signatures of support from all around the world by Midnight October 29th (GMT). [button_color url=”http://sallyjustme.blogspot.se/2015/10/karina-hansen-please-sign.html” content=”Sign the letter” target=””] Dear Prime Minister Lars Lokke Rasmussen, We the undersigned wish to appeal to you,
Editor’s note: Karina Hansen is young Danish woman with severe ME. In February 2013, she was forcibly removed from her home by police and taken to a facility for functional (i.e,. psychosomatic) illnesses. The ME Alliance is organizing an action for Karina’s third birthday away from home. You can help Karina by sending cards and gifts
