List of scientific and media response to release of PACE trial data: Difference between revisions

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Follow the release of the [[PACE trial]] data and subsequent reanalysis, there was extensive coverage in the media, scientific journals, and other outlets. The following includes a list of coverage:  
Follow the release of the [[PACE trial]] data and subsequent reanalysis, there was extensive coverage in the media, scientific journals, and other outlets. The following includes a list of coverage:  


'''General media coverage'''
=== General media coverage ===
 
* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study]  .<ref name="RetractWatch20160817" />
* 17 August 2016 - Retraction Watch [http://retractionwatch.com/2016/08/17/uk-tribunal-orders-release-of-data-from-controversial-chronic-fatigue-syndrome-study/ Tracking retractions as a window into the scientific process UK tribunal orders release of data from controversial chronic fatigue syndrome study]  .<ref name="RetractWatch20160817" />
* 18 August 2016 - Dagens Medicine, Sweden  [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
* 18 August 2016 - Dagens Medicine, Sweden  [https://www.dagensmedicin.se/artiklar/2016/08/18/universitet-doms-att-lamna-ut-ramaterial/ Döms lämna ut råmaterial till Pace-studien]
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*8 February  2018 - The Herald  [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]  
*8 February  2018 - The Herald  [http://www.heraldscotland.com/news/15982563.Glasgow_MP_secures_parliamentary_examination_of_controversial_ME_trial/ Glasgow MP Carol Monaghan secures parliamentary examination of controversial ME trial]  


 
=== Queen Mary University of London/Student Union - The Print Newspaper ===
'''Queen Mary University of London/Student Union - The Print Newspaper'''
 
*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*19th January 2016 - [http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ Scientists Demand Transparency on PACE Trial]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*3 October 2016 - [http://theprintnews.co.uk/2016/10/judge-dismisses-qmuls-appeal-university-must-release-pace-data/ Judge Dismisses QMUL’s Appeal, University Must Release PACE Data]
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/  
*14 November 2016 - [http://theprintnews.co.uk/2016/11/pace-results-released/ PACE Trial Data Released]/  


 
=== Blogs ===
'''Blogs'''
 
*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*Solve CFS - [http://solvecfs.org/preliminary-analysis-of-newly-released-pace-trial-data-confirms-initial-publication-results-were-unsound-september-21-2016/ Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
*OccupyME - [http://occupyme.net/2016/09/21/pace-grossly-exaggerated/ PACE: Grossly Exaggerated]
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*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]
*Hannah Radenkova - [http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ The PACE trial Fiasco]


 
=== Media Response by PACE authors ===
'''Media Response by PACE authors'''
 
*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
*30 September 2016 - Guardian [https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research If my team’s research on ME is rejected, the patients will suffer] by [[Peter White]]
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal.  [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref>https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
* 21 September 2016 [http://www.bmj.com/content/354/bmj.i5053 Freedom of information: can researchers still promise control of participants’ data?] Note: This article was written by Nigel Hawkes of the BMJ who wrote the earlier article in the BMJ 'Dangers of Research into chronic fatigue syndrome' in 2011. The narrative of threatening activists was dismissed by the Tribunal.  [[Alem Matthees]] submitted a rapid response to the BMJ but this was not published and he then published it on pubmed.<ref>https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328</ref>
*30 September 2016 -  Discover Magazine  [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)
*30 September 2016 -  Discover Magazine  [http://blogs.discovermagazine.com/neuroskeptic/2016/09/30/what-works-for-cfsme-the-pace-odyssey/#.Wnikd1KcY_U 'Open Data and CFS/ME – A PACE Odyssey Part 1'] (Part 2 was never published by Neuroskeptic)


 
=== Scientific Journals ===
'''Scientific Journals'''
 
* Oct 5, 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* Oct 5, 2016 - International Journal of Care Coordination - editorial [http://m.icp.sagepub.com/content/19/1-2/3.full.pdf 'Can scientific evidence be valid if irrelevant to patients?']
* Sep 15, 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']
* Sep 15, 2016 - Dr [[Keith Geraghty]] and [[Charlotte Blease]] in the Journal of Health Psychology [http://journals.sagepub.com/doi/full/10.1177/1359105316667798 'Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent']

Revision as of 08:59, August 3, 2022

Follow the release of the PACE trial data and subsequent reanalysis, there was extensive coverage in the media, scientific journals, and other outlets. The following includes a list of coverage:

General media coverage[edit | edit source]

Queen Mary University of London/Student Union - The Print Newspaper[edit | edit source]

Blogs[edit | edit source]

Media Response by PACE authors[edit | edit source]

Scientific Journals[edit | edit source]

Some of the PACE authors had a 'Response to the editorial' in January 2017 which in turn led to over a dozen responses in the Journal of Health Psychology.

See also[edit | edit source]

References[edit | edit source]

  1. ↑ Retraction Watch (August 17, 2016), UK tribunal orders release of data from controversial chronic fatigue syndrome study
  2. ↑ http://sci-hub.cc/doi/10.1136/bmj.i4614
  3. ↑ iNews UK; Felicity Morse (August 19, 2016), Chronic Fatigue Syndrome sufferers have just had a small victory, archived from the original on August 15, 2019
  4. ↑ iNews UK; Paul Gallagher (August 19, 2016), Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released
  5. ↑ What Doctors Don't Tell You (website) (August 22, 2016), Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data
  6. ↑ Edwards, Jonathan CW (August 27, 2016), "Tribunal was right to order release of chronic fatigue trial data", The Conversation (UK)
  7. ↑ Anderssen, Alex (August 17, 2016), "QMUL "studying" PACE data-release ruling", #MEAction
  8. ↑ https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw
  9. ↑ https://twitter.com/pathcath/status/819232955155488769
  10. ↑ https://www.newscientist.com/letter/mg23331141-000-6-we-can-share-data-only-when-rules-are-respected/ We can share data only when rules are respected
  11. ↑ http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting
  12. ↑ https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html
  13. ↑ http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored
  14. ↑ Gelman, Andrew (July 9, 2017), "A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research", New Yorker (US)
  15. ↑ https://www.youtube.com/watch?v=g8x-VBLcRuA
  16. ↑ https://www.nature.com/articles/d41586-018-01285-x
  17. ↑ https://www.nature.com/articles/d41586-018-03055-1
  18. ↑ https://www.ncbi.nlm.nih.gov/pubmed/27654128#cm27654128_30328

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

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.

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