Alem Matthees

Alem Matthees lives in East Perth, Australia.

PACE Investigation
Alem Matthees was the original requester of the anonymised data of the PACE study, a controversial study which concluded that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) was the preferred treatment for chronic fatigue syndrome. On 24 March 2014, he filed a UK Freedom of Information Act (FOIA) for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees' favor that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in Aug 2016.

Many scientists around the world supported Matthees' request, as they, too, wanted to be able to test the study's methods and statistical analysis.

Appeal Paperwork

 * Alem Matthees' Main Response in First-Tier Tribunal Appeal

Articles

 * 2015, Assessment of recovery status in chronic fatigue syndrome using normative data. "A diagnosis of CFS excludes many chronic disabling illnesses present in the general population, and CFS cohorts can almost exclusively consist of people of working age; therefore, it is suggested that thresholds for recovery should not be based on population samples which include a significant proportion of sick, disabled or elderly individuals. It is highlighted how a widely used measure in CFS research, the SF-36 physical function subscale, is not normally distributed."

Comments About Pace

 * 16 December 2015, Matthees Comments to Retraction Watch "...the fact that the trial is repeatedly promoted to patients and clinical commissioners as definitive and highly robust, patients and independent researchers have every right to demand a re-analysis..."
 * 11 Dec 2015, Comments to PLoS One article, Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: a cost-effectiveness analysis."There are crucial facts and context missing from QMUL's (and now KCL's in part) narrative of anti-science harassment against the PACE trial. They appear to conflate all significant criticism with harassment without any regard for the validity of the comments made...."
 * 21 January 2015, Comments to BMJ article, Tackling fears about exercise is important for ME treatment, analysis indicates"AllTrials supporters may be interested in the multiple major deviations/additions to the PACE Trial protocol, apparently occurring almost exclusively after the authors were already unblinded to the trial data and familiar with the distribution of various outcomes..."

Learn More

 * The Information Commissioner's Full Response to QMUL's appeal