Alem Matthees

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Alem Matthees is an ME/CFS advocate and PACE trial critic who lives with very severe ME/CFS. He resides in Como, a suburb of Perth, Western Australia, Australia with his mother and step-father who are his care providers.[1] In 2016, he won a legal complaint against the institution that sponsored the PACE study resulting in the first release of anonymised data by the PACE researchers.[2]

PACE Investigation[edit | edit source]

Alem Matthees was the original requester of the anonymised data of the PACE study, 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. 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.[3][4]

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.[5]

Health[edit | edit source]

Alem's health suffered significantly in part from the efforts required for the 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[.]"[6]

Awards[edit | edit source]

  • 2016, Finalist for Wego Health Awards for Health Activist Hero and Lifetime Achievement[7]

Appeal Paperwork[edit | edit source]

Information Commissioner's Full Response[edit | edit source]

Articles[edit | edit source]

  • 17 January 2017, "How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery" by Jason Murphy in
  • 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[8] (Abstract)
  • 01 Dec 2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Letter by Alem Matthees in Annals of Internal Medicine[9]
  • 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."[10]

Professional journal comments about PACE by Matthees[edit | edit source]

Learn More[edit | edit source]

See Also[edit | edit source]

References[edit | edit source]

The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history