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Alem Matthees
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[[File:Alem Matthee.png|right]] '''Alem Matthees''' is an [[ME/CFS]] advocate and [[PACE trial]] critic who lives with [[Severe and very severe ME|very severe ME]]. He resides in Como, a suburb of Perth, Western [[Australia]], with his mother and step-father who are his care providers.<ref name=":0">{{Cite web | url = http://www.virology.ws/2018/05/07/trial-by-error-my-visits-with-alem-matthees/ | title = Trial By Error: My Visits with Alem Matthees | last = Tuller | first = David | date = May 7, 2018 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|url-status= | access-date = 2018-08-11}}</ref> 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 Trial Management Group|PACE researchers]].<ref name=":1">{{Cite news |url =http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF | title = First Tier Tribunal - EA/2015/0269 | last = | first = | date = |work=Information Rights - Decisions - Tribunals|access-date=| archive-url = | archive-date = |url-status = | year=2015 |format=PDF}}</ref> ==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.<ref>{{Cite web | url = http://www.virology.ws/2016/02/10/open-letter-lancet-again/ | title = An open letter to The Lancet, again | last = Tuller | first = David | date = Feb 10, 2016 | website = [[Virology blog]]|language=en-US|archive-url=|archive-date=|url-status= | access-date = 2018-08-11}}</ref><ref>{{Cite web | url = https://jcoynester.wordpress.com/tag/alem-matthees/ | title = Alem Matthees - Release the PACE trial data: My submission to the UK Tribunal | last = Coyne | first = James | date = Apr 18, 2016 | website = jcoynester.wordpress.com|language=en|archive-url=|archive-date=|url-status= | access-date = 2018-08-11}}</ref> On 24 March 2014, he filed a [[United Kingdom|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.<ref name=":1" /> ==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[.]"<ref name=":0" /> ==Awards== *2016, Finalist for Wego Health Awards for Health Activist Hero and Lifetime Achievement<ref>{{Cite web | url = https://awards.wegohealth.com/nominees/12435 | title = Check out Alem Matthees's #WEGOHealthAwards Nomination | website = WEGO Health Awards|language=en | access-date = 2018-08-11}}</ref> ==Appeal Paperwork== *[https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf Alem Matthees' Main Response in First-Tier Tribunal Appeal]<ref>{{Cite news |url =https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf | title=In the First-Tier Tribunal (Information Rights) EA/2015/0269 | last = | first = | date = |work=valerieeliotsmith.files|access-date=| archive-url = | archive-date = |url-status = | format=PDF}}</ref> ==Information Commissioner's Full Response== *[http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF The Information Commissioner's Full Response to QMUL's appeal]<ref name=":1" /> ==Articles== *Dec 1 2015, [http://annals.org/aim/article-abstract/2473521/treatment-myalgic-encephalomyelitis-chronic-fatigue-syndrome Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]<ref>{{Cite journal | last = Matthees | first = Alem | date = 2015-12-01 | title = Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | url =http://annals.org/aim/article/2473521/treatment-myalgic-encephalomyelitis-chronic-fatigue-syndrome | journal = Annals of Internal Medicine|language=en | volume = 163 | issue = 11 | pages = 886|doi=10.7326/L15-5173|issn=0003-4819}}</ref> Letter by Alem Matthees *Apr 2015, [https://link.springer.com/article/10.1007%2Fs11136-014-0819-0 Assessment of recovery status in chronic fatigue syndrome using normative data]<ref name="Matthees,2015" /> <blockquote>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."<ref name="Matthees,2015" /></blockquote> *Jan 17 2017, [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery] <ref name=":2">{{Cite news |url =https://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 | title = How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery | last = Murphy | first = Jason | date = Jan 17, 2017|work=NewsComAu | access-date = 2018-08-11|archive-url=|archive-date=|url-status=}}</ref> *2017, [https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1259724 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]<ref name="Wilshire,et al, 2017" /> [https://www.researchgate.net/publication/312464313_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 (Full text)] ==Professional journal comments about PACE by Matthees== *Jan 21, 2015, [http://www.bmj.com/content/350/bmj.h227/rr-16 Comments to BMJ article by Matthees, Tackling fears about exercise is important for ME treatment, analysis indicates]<ref name=":3" /> <blockquote>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..."<ref name=":3">{{Cite journal | last = Matthees | first = Alem | first2 = | date = Jan 14, 2015 | title = Re: Tackling fears about exercise is important for ME treatment, analysis indicates |url =https://www.bmj.com/content/350/bmj.h227/rr-16 | journal = The BMJ|type=Response|language=en | volume = | pages = |doi=|via=}}</ref></blockquote> *Dec 11, 2015, [http://www.ncbi.nlm.nih.gov/myncbi/alem.matthees.1/comments/ 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.]<ref name=":5">{{Cite web | url = https://www.ncbi.nlm.nih.gov/myncbi/alem.matthees.1/comments/ | title = 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. | last = Matthees | first = Alem | date = | website = NLM NIH|at=Follow "FTP site" link - Comment Saved|archive-url=ftp://ftp.ncbi.nlm.nih.gov/pubmed/pubmedcommons/|archive-date=Feb 23, 2018|url-status=|access-date=}}</ref> <blockquote>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...."<ref name=":5" /></blockquote> *Dec 16, 2015, [http://retractionwatch.com/2015/12/16/plos-one-issues-editors-note-over-disputed-chronic-fatigue-research/ Matthees' Comments to Retraction Watch]<ref name=":4" /> <blockquote>"...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..."<ref name=":4">{{Cite news |url =https://retractionwatch.com/2015/12/16/plos-one-issues-editors-note-over-disputed-chronic-fatigue-research/#comment-879294 | title = PLOS ONE issues editor’s note over controversial chronic fatigue syndrome research | last = Matthees | first = Alem | date = 2015-12-16|work=Retraction Watch | access-date = 2018-08-11| archive-url = | archive-date = |url-status = | language=en-US|type=Comment}}</ref></blockquote> ==Learn more== *Aug 16, 2016, [https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/ ''Tribunal Orders Release of PACE Trial Data (QMUL v the IC and Matthees)'']<ref>{{Cite news |url =https://valerieeliotsmith.com/2016/08/16/tribunal-orders-release-of-pace-trial-data-qmul-v-the-ic-and-matthees/ | title = TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees) | last = Eliot-Smith | first = Valerie | date = 2016-08-16|work=valerieeliotsmith | access-date = 2018-08-11| archive-url = | archive-date = |url-status = | language=en-US}}</ref> *Nov 29, 2016, [https://meaustralia.net/2016/11/29/alem-matthees-how-an-australians-foi-request-busted-open-a-uk-science-scandal/ ''Alem Matthees: how an Australian’s FOI request busted open a UK science scandal''] <ref>{{Cite news |url =https://meaustralia.net/2016/11/29/alem-matthees-how-an-australians-foi-request-busted-open-a-uk-science-scandal/ | title = Alem Matthees: how an Australian’s FOI request busted open a UK science scandal | last = Nimmo | first = Sasha | date = 2016-11-29|work=ME Australia | access-date = 2018-08-11| archive-url = | archive-date = |url-status = | language=en-US}}</ref> *Jan 8, 2017, [http://www.news.com.au/technology/science/human-body/how-alem-matthees-letter-helped-solve-chronic-fatigue-syndrome-mystery/news-story/eb566e1a0f6bcaadb362818a12c2e386 ''How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery'']<ref name=":2" /> *May 7, 2018, [http://www.virology.ws/2018/05/07/trial-by-error-my-visits-with-alem-matthees/ Trial By Error: My Visits with Alem Matthees]<ref name=":0" /> ==See also== *[[PACE trial]] *[[Severe and very severe ME]] ==References== <references> <ref name="Matthees,2015">{{Citation | last =Matthees | first1 = Alem | author-link1 = Alem Matthees | title = Assessment of recovery status in chronic fatigue syndrome using normative data. | journal = Quality of Life Research | volume = 24 | issue = 4 | page = 905-7 | date =April 2015 | pmid = 25304959 | doi = 10.1007/s11136-014-0819-0 }}</ref> <ref name="Wilshire,et al, 2017">{{Citation | last =Wilshire | first1 = C | author-link1 = Carolyn Wilshire | last2 = Kindlon | first2 = T | author-link2 = Tom Kindlon | last3 =Matthees | first3 = A | author-link3 = Alem Matthees | last4 = McGrath | first4 = S | author-link4 = Simon McGrath | title = 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 | journal = Fatigue: Biomedicine, Health & Behavior | volume = 5 | issue = 1 | page = 43-56 | date = 2017 | doi = 10.1080/21641846.2017.1259724 }}</ref> </references> [[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:Australian advocates or allies]] [[Category:PACE trial critics]] [[Category:Citizen scientists]] [[Category:Psychological paradigm critics]]
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