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 anonymized data by the PACE researchers.
PACE Investigation[edit | edit source]
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) request for the PACE trial 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[edit | edit source]
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[edit | edit source]
- 2016, Finalist for Wego Health Awards for Health Activist Hero and Lifetime Achievement
Appeal Paperwork[edit | edit source]
Information Commissioner's Full Response[edit | edit source]
Articles[edit | edit source]
- Dec 1 2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Letter by Alem Matthees
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[edit | edit source]
- 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 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...."
"...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..."
Learn more[edit | edit source]
- 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
See also[edit | edit source]
References[edit | edit source]
- Tuller, David (May 7, 2018). "Trial By Error: My Visits with Alem Matthees". www.virology.ws. Retrieved Aug 11, 2018.
- "First Tier Tribunal - EA/2015/0269" (PDF). Information Rights - Decisions - Tribunals. 2015.
- Tuller, David (Feb 10, 2016). "An open letter to The Lancet, again". www.virology.ws. Retrieved Aug 11, 2018.
- Coyne, James (Apr 18, 2016). "Alem Matthees - Release the PACE trial data: My submission to the UK Tribunal". jcoynester.wordpress.com. Retrieved Aug 11, 2018.
- "Check out Alem Matthees's #WEGOHealthAwards Nomination". WEGO Health Awards. Retrieved Aug 11, 2018.
- "In the First-Tier Tribunal (Information Rights) EA/2015/0269" (PDF). valerieeliotsmith.files.
- Matthees, Alem (Dec 1, 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 163 (11): 886. doi:10.7326/L15-5173. ISSN 0003-4819.
- Matthees, Alem (April 2015), "Assessment of recovery status in chronic fatigue syndrome using normative data.", Quality of Life Research, 24 (4): 905-7, doi:10.1007/s11136-014-0819-0, PMID 25304959
- Murphy, Jason (Jan 17, 2017). "How Alem Matthees' letter helped solve Chronic Fatigue Syndrome mystery". NewsComAu. Retrieved Aug 11, 2018.
- Wilshire, C; Kindlon, T; Matthees, A; McGrath, S (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", Fatigue: Biomedicine, Health & Behavior, 5 (1): 43-56, doi:10.1080/21641846.2017.1259724
- Matthees, Alem (Jan 14, 2015). "Re: Tackling fears about exercise is important for ME treatment, analysis indicates". The BMJ (Response).
- Matthees, Alem. "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". NLM NIH. Follow "FTP site" link - Comment Saved. Archived from the original on Feb 23, 2018.
- Matthees, Alem (Dec 16, 2015). "PLOS ONE issues editor's note over controversial chronic fatigue syndrome research". Retraction Watch (Comment). Retrieved Aug 11, 2018.
- Eliot-Smith, Valerie (Aug 16, 2016). "TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees)". valerieeliotsmith. Retrieved Aug 11, 2018.
- Nimmo, Sasha (Nov 29, 2016). "Alem Matthees: how an Australian's FOI request busted open a UK science scandal". ME Australia. Retrieved Aug 11, 2018.
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.
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct 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.