Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
List of scientific and media response to release of PACE trial data
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
=== General media coverage === * August 17, 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" /> * August 18, 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] * August 22, 2016 - BMJ [http://www.bmj.com/content/354/bmj.i4614 Tribunal orders university to release data from PACE chronic fatigue study] <ref>http://sci-hub.cc/doi/10.1136/bmj.i4614 </ref> * August 19, 2016 - iNews UK [https://inews.co.uk/opinion/chronic-fatigue-syndrome-sufferers-just-small-victory/ Chronic Fatigue Syndrome sufferers have just had a small victory], iNews UK, <ref name="iNews20160819FM" /> * August 19, 2016 - iNews UK [https://inews.co.uk/essentials/news/health/tribunal-chronic-fatigue-syndrome-data-released/ Chronic Fatigue Syndrome: tribunal orders data from controversial trial to be released], iNews UK, <ref name="iNews20160819PG" /> * August 19, 2016 - Applied Clinical Trials - [http://www.appliedclinicaltrialsonline.com/tribunal-orders-release-withheld-data-london-trial Tribunal Orders Release of Withheld Data from London Trial] * 22 August 2016 - WDDTY [https://www.wddty.com/news/2016/08/researchers-who-claimed-chronic-fatigue-is-all-in-the-mind-forced-to-disclose-data.html Researchers who claimed chronic fatigue is “all in the mind” forced to disclose data]<ref name="WDDTY20160822" /> * August 27, 2016 - The Conversation [https://theconversation.com/tribunal-was-right-to-order-release-of-chronic-fatigue-trial-data-64255 Tribunal was right to order release of chronic fatigue trial data], [[Jonathan Edwards]], 27 Aug 2016.<ref name="EdwardsJC20160827" /> * August 30, 2016 - SBS.Com Australia [http://www.sbs.com.au/news/thefeed/article/2016/08/29/do-you-suffer-chronic-fatigue-syndrome-theres-some-good-news-you Do you suffer from Chronic Fatigue Syndrome? There's some good news for you] * September 6, 2016 - Huffington Post [http://www.huffingtonpost.de/melanie-schickedanz/teil-3-studie-zum-erschoe_b_11845638.html Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt/ Study on fatigue syndrome: When science fails] * September 12, 2016 - WDDTY [https://www.wddty.com/news/2016/09/chronic-fatigue-sufferers-getting-the-wrong-treatment-thanks-to-a-falsified-study.html Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study] * September 21, 2016 - STAT News by [[Julie Rehmeyer]] [https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back] * September 21, 2016 - Business Insider UK [http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9 How millions of patients with a crippling, misunderstood disease were misled by bad science]/ * September 21, 2016 - New York Mag, Science of US [http://nymag.com/scienceofus/2016/09/a-big-chronic-fatigue-syndrome-study-has-been-discredited.html?mid=full-rss-scienceofus&mid=full-rss-scienceofus The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome title]/ *22 September 2016 - Patient POV [http://www.patientpov.org/chronic-fatigue-syndromeme/moving-goal-posts-hazards-chronic-fatigue-syndrome-treatment-trial Moving the Goal Posts to Catch the Ball and Other Hazards of A Chronic Fatigue Syndrome Treatment Trial]/ * 22 September 2016 - MedPage Today [http://www.medpagetoday.com/primarycare/generalprimarycare/60396 PACE Takedown] * September 23, 2016 - Dagens Medicine, Sweden [https://www.dagensmedicin.se/artiklar/2016/09/23/pace-studie-kritiserad-pa-nytt-efter-slappt-radata/ Pace-studie kritiserad på nytt efter släppt rådata/ Pace study criticized again after released the raw data] * September 23, 2016 - Science Alert [http://www.sciencealert.com/bad-science-has-misled-millions-with-chronic-fatigue-court-order-reveals Bad science has misled millions with chronic fatigue, court order reveals] * September 24, 2016 - Retraction Watch [http://retractionwatch.com/2016/09/24/weekend-reads-worlds-most-prolific-peer-reviewer-replication-backlash-carries-on-controversial-pace-study-re-analyzed/ controversial PACE study re-analyzed] * September 26, 2016 - Health Insights UK [http://healthinsightuk.org/2016/09/26/independent-investigation-reveals-nice-approved-treatment-only-a-fraction-as-effective-as-experts-claim-it-is/ Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.] * September 28, 2016 - ''The Times'' [http://www.meassociation.org.uk/2016/09/exercise-and-therapy-cure-for-me-is-seriously-flawed-the-times-28-september-2016/ Exercise and therapy cure for ME is ‘seriously flawed’] *29 September 2016 - ''BMJ'' [http://www.bmj.com/content/354/bmj.i5230 Reanalysis of PACE trial reignites row over chronic fatigue treatment] * October 2, 2016 - ''The Canary'' [http://www.thecanary.co/2016/10/02/results-really-didnt-want-see-key-mecfs-trial-data-released/ The results they really didn’t want you to see: key ME/CFS trial data released] *6 October 2016 - Newswork Radio WHYY-FM Podcast with [[Julie Rehmeyer]] [http://www.newsworks.org/index.php/thepulse/item/97724-advice-for-chronic-fatigue-sufferers-may-have-been-all-wrong?l=dt Was advice for people with Chronic Fatigue Syndrome all wrong?] *6 October 2016 - The Limbic [http://thelimbic.com/rheumatology/pace-trial-labeled-a-sham/ PACE trial labeled a sham] *7 October 2016 - 6 Minutes, Australia [http://www.6minutes.com.au/rheumatologyupdate/latest-news/analysis-rekindles-chronic-fatigue-controversy Analysis rekindles chronic fatigue controversy] *9 October 2016 - Aftenposten, Norway [http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html Forskningsjuks eller rabiate pasienter?] *17 October 2016 - ''The Telegraph'' [http://www.telegraph.co.uk/wellbeing/doctors-diary/doctors-diary-gove-was-right-we-have-had-enough-of-experts/ Doctor's Diary: Gove was right, we have had enough of experts] *20 October 2016 - ''Hippocratic Post'' [http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/ ME: The truth about exercise and CBT] *19 October 2016 - Deutschland Funk Radio (Germany) [http://www.deutschlandfunk.de/chronisches-erschoepfungssyndrom-patienten-fechten.676.de.html?dram:article_id=368979 Patienten fechten Studienergebnisse an/ Patients are challenging study results] * 27 October 2016 - Undark [https://undark.org/article/chronic-fatigue-graded-exercise-pace/ For Chronic Fatigue Syndrome, a Dubious Therapy / Worse Than the Disease] by Dr [[David Tuller]] * 31 October 2016 - Undark [https://undark.org/2016/10/31/undark-podcast-chronic-fatigue/ Undark Podcast #8: Worse Than the Disease] with NYT Science Times editor David Corcoran & David Tuller *2 November 2016 - ''The Times'' [http://www.meassociation.org.uk/2016/11/i-got-me-and-thought-this-is-the-end-the-times-2-november-2016/ I got ME and thought: ‘This is the end] * August 17, 2016 - [http://www.meaction.net/2016/08/17/qmul-studying-pace-data-release-ruling/ QMUL "studying" PACE data-release ruling], #MEAction, Aug 17, 2016.<ref name="MEAction20160817qmul" /> * 7 December 2016 - Private Eye [https://www.facebook.com/photo.php?fbid=10154289534102144&set=gm.10154676517578257&type=3&theater Trial on Trial] and correspondence <ref>https://twitter.com/pathcath/status/812439470586953728?ref_src=twsrc%5Etfw </ref><ref>https://twitter.com/pathcath/status/819232955155488769 </ref> * 19 December 2016 - Undark [https://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/ A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)] * 1 January 2017 - Suomen Kuvalehti [https://suomenkuvalehti.fi/jutut/tiede/miljoonia-maksanut-jattitutkimus-paljastui-roskaksi-yha-sairaammat-potilaat-julistettiin-parantuneiksi/?shared=943951-aff4729c-999 Miljoonia maksanut jättitutkimus paljastui roskaksi: Yhä sairaammat potilaat julistettiin parantuneiksi] * 17 January 2017 - News.com Australia [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] *19 January 2017 - Fysioterapeuten, Norway [http://fysioterapeuten.no/Aktuelt/Nyheter/Omstridt-CFS-ME-studie-var-manipulert Omstridt CFS/ME-studie var manipulert]/ Controversial CFS / ME study was manipulated * 8 February 2017 - ''New Scientist'' [https://www.newscientist.com/article/mg23331123-400-we-need-transparent-trials-to-keep-confidence-in-medicine/ We need transparent trials to keep confidence in medicine] and response by PACE author.<ref>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 </ref> * 20 February 2017 - Carte Blanche South Africa (Investigative Journalism TV) - [https://www.facebook.com/carteblanchetv/posts/1369608676415385 CFS: Millions Missing] * 8 March 2017 - Observant, Netherlands (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12027/Myth-ME-is-a-mental-illness Myth: ME is a mental illness] and response by PACE authors<ref>http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12101/Myth-busting-a-myth-busting </ref> * 18 March 2017 - ''The New York Times'' (Sunday Review) by [[Julie Rehmeyer]] & [[David Tuller]] [https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html?smid=tw-share Getting It Wrong on Chronic Fatigue Syndrome] * 21 March 2017 - ''The Guardian'' [https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up?CMP=share_btn_tw Yet more research shows chronic fatigue syndrome is real. When will health services catch up?] * 22 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk Gedrags- en bewegingstherapie zijn schadelijk] / [https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.observantonline.nl%2FHome%2FArtikelen%2FarticleType%2FArticleView%2FarticleId%2F12100%2FGedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url "Behavioral and movement therapy are harmful"] *23 March 2017 - ''The Conversation'' (Academic Rigour, journalistic flair) [http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma] by Prof Steven Lubet and on MedicalXpress <ref>https://medicalxpress.com/news/2017-03-chronic-fatigue-syndrome-doctored-adding.html </ref> and Associated Press (AP) The Big Story <ref>http://bigstory.ap.org/article/2c3a7208dd8140e0ae725006377ef245/how-study-about-chronic-fatigue-syndrome-was-doctored</ref> *27 March 2017 - Observant, Netherlands, (Mythbusters) [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12115/PACE-trial-misrepresents-their-own-results-again PACE trial misrepresents their own results again] by Dr [[Mark Vink]] *29 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12131/Stunned-by-the-absence-of-critical-thinking“ Stunned by the absence of critical thinking”] by Dr [[Carolyn Wilshire]] *26 March 2017 - ''Jerusalem Post'', Israel [http://www.pressreader.com/israel/jerusalem-post/20170326/282024737091232 Wrong of Chronic Fatigue Syndrome] *27 March 2017 - Observant, Netherlands, [http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12119/No-scientific-ground-to-stand-on No scientific ground to stand on] by Dr [[David Tuller]] * Apr 4, 2017 - Science Based Medicine, [https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/ Treating Chronic Fatigue Syndrome with Cognitive Behavioral Therapy and Graded Exercise Therapy: How the PACE Trial Got It Wrong] by Dr Harriet Hall *30 May 2017 - Undiscovered - Science Friday (Podcast) - [http://www.undiscoveredpodcast.org/sick-and-tired.html Sick and Tired] [https://www.pri.org/programs/undiscovered/sick-and-tired Sick and Tired on PRI] (30.54) * 9 July 2017 - New Yorker by Andrew Gelman [http://www.newyorker.com/tech/elements/a-memoir-of-chronic-fatigue-illustrates-the-failures-of-medical-research A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research]<ref name="GelmanA20170709" /> * 13 July 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/ongemakkelijke-onwaarheden.htm Ongemakkelijke (on)waarheden]/ [https://corsius.wordpress.com/2017/08/03/incovenient-untruth/ 'Inconvenient (un)truth'] (English translation) *3 Aug 2017 - Mining Journal [http://www.miningjournal.net/life/2017/08/chronic-fatigue-syndrome-reality-conflicts-with-medical-study/ 'Chronic fatigue syndrome reality conflicts with medical study'] * 8 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm. CVS/ME – Nog meer ongemakkelijke (on)waarheden] / [https://translate.google.nl/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://www.medischcontact.nl/opinie/blogs-columns/blog/-cvsme-nog-meer-ongemakkelijke-onwaarheden-.htm CVS / ME - More uncomfortable (on) truths] * 22 Sept 2017 - Medisch Contact, Netherlands [https://www.medischcontact.nl/opinie/blogs-columns/blog/cvsme-de-non-dialoog.htm CVS/ME – de non-dialoog] / * 28 Sept 2017 - Läkartidningen, Sweden, by Sten Helmfrid and Johan Edsberg [http://lakartidningen.se/Opinion/Debatt/2017/09/Dags-att-forkasta-PACE-studien/? PACE-studien']/ [https://www.researchgate.net/publication/320101462_Time_to_Reject_the_PACE_Study/ Time to Reject the PACE Study] * 3 Oct 2017 - Volkskrant, Netherlands [https://www.volkskrant.nl/wetenschap/als-je-cvs-hebt-is-naar-de-wc-gaan-al-eenmarathon~a4519279/?hash=028240debc501ca3d04f32b616572aace48beca9 'Als je CVS hebt is naar de wc gaan al een marathon'] * 5 Oct 2017 - ''Metro'', Netherlands [https://www.metronieuws.nl/lezerscolumn/lou-corsius/maand-van-de-geschiedenis/2017/10/de-professor-gelooft-in-sprookjes De professor gelooft in sprookjes] / [https://corsius.wordpress.com/2017/10/05/the-professor-believes-in-fairy-tales/ The professor believes in fairy tales] by Lou Corsius in response to [https://www.rd.nl/opinie/bij-cvs-me-is-cgt-terecht-eerstekeusbehandeling-1.1433876 Bij CVS/ME is cgt terecht eerstekeusbehandeling] in Reformatorisch Dagblad by Gijs Bleijenberg. * 10 October 2017 - Reformatorisch Dagblad, Netherlands [https://www.rd.nl/gedrags-en-bewegingstherapie-helpen-cvs-me-patiënt-niet-1.1435838 Gedrags- en bewegingstherapie helpen CVS/ME-patiënt niet] *13 October 2017 - NPO1, [https://en.wikipedia.org/wiki/EenVandaag EenVandaag], Netherlands [https://eenvandaag.avrotros.nl/item/grote-controverse-over-behandeling-chronische-vermoeidheid/ Grote controverse over behandeling chronische vermoeidheid] <ref>https://www.youtube.com/watch?v=g8x-VBLcRuA</ref>. *23 October 2017 - ''Morning Star'' [http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfB9gVKZM_W ME Sufferers Being Shamefully Let Down By Professionals] *2 November 2017 - Huffington Post UK Edition [http://m.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html Will The UK Establishment Finally Stop Denying The Reality Of ME?] by Dr [[Simon Duffy]] (featuring [[Unrest]] film) *10 November 2017 - Psychology Today [https://www.psychologytoday.com/blog/open-gently/201711/chronic-fatigue-patients-more-research-backing-you Chronic Fatigue Syndrome Patients: More Research Backing You Up] *3 January 2018 - Nature [https://www.nature.com/articles/d41586-017-08965-0 'A reboot for chronic fatigue syndrome research'] (covers the impact on research) and responses from PACE authors and others.<ref>https://www.nature.com/articles/d41586-018-01285-x</ref><ref>https://www.nature.com/articles/d41586-018-03055-1</ref> *7 January 2018 - Independent [http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html 'Time for Unrest: Why patients with ME are demanding justice'] (featuring [[Unrest]] film) *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]
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs