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 with strong data 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.

Alem's health suffered significant from the effects of the FOI request and tribunal. One year after the tribunal Alem remains very ill and bed-ridden.

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

• 17 January 2017, "How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery" by Jason Murphy in news.com.au
• 14 Dec 2016, "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", by Carolyn Wilshire, Tom Kindlon, Alem Matthees, & Simon McGrath in Fatigue: Biomedicine, Health & Behavior
• 01 Dec 2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Letter by Alem Matthees in Annals of Internal Medicine
• Apr 2015, Assessment of recovery status in chronic fatigue syndrome using normative data, by Alem Matthees in Quality of Life Research: "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."

Professional journal comments about PACE by Matthees

• 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 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...."
• 21 January 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..."

Learn More

• Jan 8, 2017, How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery by Jason Murphy
• Nov 29, 2016, Alem Matthees: how an Australian’s FOI request busted open a UK science scandal by Sasha Nimmo
• Aug 16, 2016, Tribunal Orders Release of PACE Trial Data (QMUL v the IC and Matthees), by Valerie Eliot Smith

See Also

• PACE trial

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Short Form 36-Item Health Survey (SF-36) - A 36-item patient-reported questionnaire, used to determine patient health status and quality of life.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.