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
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
Health scientist and New York Times published journalist David Tuller today launched a damning critique upon the UK’s £5 million PACE trial in an article published on the popular Virology Blog. The PACE trial was an open-label study of graded exercise therapy and cognitive behavioural therapy for chronic fatigue syndrome that used subjective measures as
Patients in the UK’s north east will benefit from muscle abnormality research put into action via hospitals.
I’m working with a national M.E. charity, Action for M.E., as their Volunteer Pharmacist, providing information about pharmacy services, writing health and pharmacy-related articles, and putting together a resource for pharmacy professionals about M.E. I’m gathering thoughts and suggestions from both people with M.E. and pharmacy professionals because it’s important that the resource includes a full picture of M.E.
UK CMRC conference to be livestreamed on 13 and 14 October Parts of this year’s UK CFS/ME Research Collaborative (CMRC) international conference, which will be held in Newcastle on Tuesday the 13th and Wednesday the 14th of October, will be livestreamed by the charity Action for ME. The conference has a full two-day agenda of
Minutes just released for the 15 July 2015 meeting of the cross-charity Forward-ME group record a discussion with Dr Martin McShane of NHS England on getting him to recommend that the NICE guideline on ME/CFS should be revised. The guideline, which should be based on the best available scientific evidence, and which is followed by
