Alem Matthees

Alem Matthees is an ME/CFS advocate and PACE trial critic who lives with very severe ME. He resides in Como, a suburb of Perth, Western Australia, with his mother and step-father who are his care providers. In 2016, he won a legal complaint against the institution that sponsored the PACE trial, study resulting in the first release of anonymised data by the PACE researchers.

PACE Investigation
Alem Matthees was the original requester of the anonymised data of the PACE trial, a controversial study in which the researchers concluded that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) was the preferred treatment for chronic fatigue syndrome (CFS). Many scientists around the world who doubted the study's conclusion supported Matthees' request, as they, too, wanted to examine the study's methods and statistical analysis.

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.

Health
Alem's health suffered significantly in part from the efforts required for the Freedom of Information (FOI) request and tribunal. In a note written to Dr. David Tuller, he wrote: "Many factors were involved in my demise[,] not simply the PACE FOI request[.] But the excessive reading and writing involved no doubt contributed[.]"

Awards

 * 2016, Finalist for Wego Health Awards for Health Activist Hero and Lifetime Achievement

Appeal Paperwork

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

Information Commissioner's Full Response

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

Articles

 * Dec 1 2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Letter by Alem Matthees


 * Apr 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.'"


 * Jan 17 2017, How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery
 * 2017, Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial (Abstract)

Professional journal comments about PACE by Matthees

 * Jan 21, 2015, Comments to BMJ article by Matthees, 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...'"


 * Dec 16, 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...'"


 * Dec 11, 2015, Comments to PLoS One article by Matthees, 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....'"

Learn More

 * Aug 16, 2016, Tribunal Orders Release of PACE Trial Data (QMUL v the IC and Matthees)
 * Nov 29, 2016, Alem Matthees: how an Australian’s FOI request busted open a UK science scandal
 * Jan 8, 2017, How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery
 * May 7, 2018, Trial By Error: My Visits with Alem Matthees