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== Suggestions moved here from the general Suggestions page == '''To make page with all blogs from patients for PACE trial and link to original PACE page'' *Ensure this data retraction and reversion is documented alongside the details of the 2015 study http://retractionwatch.com/2016/05/20/plos-editors-discussing-authors-decision-to-remove-chronic-fatigue-syndrome-data/ *Add blog on trial participants https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/ *Link to Peter Kemp blogs, and consider using (with credit) his excellent charts https://peterkempblog.wordpress.com/2016/09/10/10/ and *Add recovery song https://www.youtube.com/watch?v=QbKTBMyZfX0 (to section for the recovery paper) *Add Cort piece http://www.healthrising.org/forums/threads/another-ball-drops-in-pace-controversy-cost-effectiveness-conclusions-faulty-plus-update.4446/ *Add Cort blog http://www.healthrising.org/blog/2016/09/23/pace-chronic-fatigue-syndrome-cbt-get-retraction/ *Add Cort piece to PACE & Lancet pages http://www.healthrising.org/blog/2016/09/14/lancet-pace-chronic-fatigue-syndrome-ridicule/ *Add Cort article on PACE http://www.healthrising.org/forums/threads/the-pace-trials-big-stumble-uk-tribunal-orders-release-of-pace-data.4776/ *Add https://spoonseeker.com/2016/05/08/door-to-freedom-revisited/ *Add https://spoonseeker.com/2016/05/01/closing-the-door-on-freedom/ *Add https://johnthejack.com/2016/04/18/why-the-dispute-about-pace-trial-data-matters-to-everyone/ *Add https://valerieeliotsmith.com/2016/04/28/qmul-v-the-information-commissioner-and-matthees-tribunal-hearing-and-open-justice/ *Add https://valerieeliotsmith.com/2016/04/14/qmuls-upcoming-appeal-against-the-information-commissioners-decision-on-release-of-pace-trial-data-20-april-2016/ *Add https://valerieeliotsmith.com/2016/05/16/qmul-v-ic-and-matthees-pace-trial-pt-2-documents-open-justice-and-open-data/ *Add https://valerieeliotsmith.files.wordpress.com/2015/12/foia-request-to-qmul-re-no-of-pace-requests.pdf http://www.healthrising.org/blog/2016/08/18/federal-report-says-almost-no-evidence-cbtget-work-chronic-fatigue-syndrome-mecfs/ and and *Add http://porbeagle.blogspot.co.uk/2015/10/statement-regarding-series-of-articles.html *Make sure this is included http://pacedocuments.blogspot.co.uk/2016/02/summary-of-my-specific-concerns-about.html *Add http://steamtraen.blogspot.co.uk/2015/12/my-current-position-on-pace-trial.html?showComment=1450133140176#c141970579755405430 *Add http://andrewgelman.com/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/ *Add http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/ *Add http://andrewgelman.com/2015/12/25/more-on-the-pace-chronic-disease-syndrome-study-scandal/ (AND OTHERS!). Pick out quotes. *Consider adding more content by Hooper, Margaret Williams, Jane Bryant, One Click, Angela Kennedy *Add letter exchange with Malcolm Hooper after PACE http://www.investinme.org/Article427%20Initial%20response%20by%20Hooper%20to%20undated%20letter%20by%20White%20to%20Horton.htm *Link Wessely page to M Williams piece on insurance industry links http://forums.prohealth.com/forums/index.php?threads/simon-wessely-et-al-the-insurance-industry.103075/ *Consider adding this chart https://twitter.com/bobbobme/status/730382076936105988?s=09 *Add http://www.meactionuk.org.uk/Hooper-to-Horton-15-April-2016.htm Tribunal stuff *Add Peter White response post data release http://blogs.bmj.com/bmj/2016/09/22/peter-white-et-al-releasing-patient-data-from-the-pace-trial-for-chronic-fatigue-syndrome/ *Link to (actually better to upload a copy to MEpedia) of Alem Matthees collation of patient experiences of PACE *Link to the actual data released to Matthew *Document AHRQ update on London criteria and PACE results and http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective/ *Add *Make sure this chart is included under the right paper https://twitter.com/TomKindlon/status/726098825518145536?s=09 *Add https://thepsychologist.bps.org.uk/volume-29/may-2016/our-struggle-between-science-and-pseudoscience Original stuff *Add BMJ article from PACE release year http://www.meassociation.org.uk/2011/06/ending-the-stalemate-over-cfsme-british-medical-journal-22-june-2011/ *Consider adding this document planning communication of the trial http://impact.ref.ac.uk/casestudies2/refservice.svc/GetCaseStudyPDF/18135 *Ensure the PACE media coverage section includes these http://www.qmul.ac.uk/media/news/items/smd/44140.html http://www.primarycarereports.co.uk/uk.html *Make sure QMUL statement on PACE is linked to http://www.qmul.ac.uk/media/news/items/smd/181216.html?utm_content=social-q3azo&utm_campaign=SocialPilot *Add this page on CFS on the Kings College web site to MEpedia http://www.kcl.ac.uk/innovation/groups/projects/cfs/health/index.aspx#prove *Make sure the press conference transcript is linked to next to the recordings link http://www.meactionuk.org.uk/pacepressconf.html *Add Jane Colby letter to PACE page and her page https://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy *Ensure this chart from 2013 recovery paper is included https://twitter.com/MECFSquestions/status/766305304443322368/photo/1 *Add neurasthenia article http://www.nejm.org/doi/full/10.1056/NEJM195708222570802 *Make sure Vink paper included https://www.researchgate.net/publication/301202396_The_PACE_Trial_Invalidates_the_Use_of_Cognitive_Behavioral_and_Graded_Exercise_Therapy_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_A_Review *Add https://jcoynester.wordpress.com/the-unfolding-story-of-removal-of-data-from-a-plos-one-article/ *Add http://www.jpsychores.com/article/S0022-3999%2816%2930232-X/abstract *Add https://jcoynester.wordpress.com/2016/05/09/half-year-passes-without-release-of-plos-one-pace-trial-data/ *Add http://retractionwatch.com/2016/05/20/plos-editors-discussing-authors-decision-to-remove-chronic-fatigue-syndrome-data/ *Source this chart and consider adding to page https://twitter.com/MECFSquestions/status/730358976429314049 *Make sure this is included http://www.fom.ac.uk/wp-content/uploads/Hidden-Disabilities-Trudie-Chalder.pdf *Add https://twitter.com/LouCorsius/status/719993266876391424/photo/1 *Add new Coyne piece to data release section https://jcoynester.wordpress.com/2016/04/07/in-the-standoff-over-release-of-the-pace-plos-one-trial-data-has-the-journal-just-blinked/ *Add new article http://psychcentral.com/news/2016/04/05/debate-over-chronic-fatigue-syndrome-therapy/101259.html *Add Vink paper, and document any new criticisms he makes, extract any poignant quotes http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php *Add latest Schneider piece (and to Lancet page) https://forbetterscience.wordpress.com/2016/04/05/does-the-lancet-care-about-patients/ *Not sure where but this oddity (absurd reasoning for stats errors) should be documented at least on Wessely and Chalder pages. https://twitter.com/EricaVerrillo/status/716387401451618304?s=09 <i>[partially done - needs review - see Biopsychosocial model]</i> *add quotes from recent Coyne and Tuller articles (see 'completed' list) *copy Coyne articles from PACE Trial and Cochrane page, to Coyne page *Add http://retractionwatch.com/2015/12/16/plos-one-issues-editors-note-over-disputed-chronic-fatigue-research/ *Add http://www.meresearch.org.uk/news/brain-white-matter/ *Add https://www.ncbi.nlm.nih.gov/pubmed/27224647 *Make sure this included https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/ ===PACE tasks Done?=== *Add Julie R slides tearing PACE apart to the page, with highlights quoted http://www.slideshare.net/JulieRehmeyer/bad-statistics-bad-reporting-bad-impact-on-patients-the-story-of-the-pace-trial?utm_source=slideshow&utm_medium=ssemail&utm_campaign=post_upload_view_cta *Add Simon McGrath article http://blogs.bmj.com/bmj/2016/09/22/simon-mcgrath-pace-trial-shows-why-medicine-needs-patients-to-scrutinise-studies-about-their-health/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork *Document tribunal findings re harassment claims *Add MEAction blog http://www.meaction.net/2016/09/22/the-pace-trial-fiasco/ *Add http://niceguidelines.blogspot.co.uk/2015/12/principal-investigators-of-pace-and.html *Add http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf *Add http://forums.phoenixrising.me/index.php?threads/peter-white-complaining-about-pace-trial-foi-request-and-calling-for-changes-to-foi-laws.42027/ *Add Nigel Hawkes defence piece post PACE data release http://www.bmj.com/content/354/bmj.i5053 http://f1000research.com/articles/5-781/v1 https://twitter.com/postersandme/status/766003841590554625/photo/1 *Document key findings of the data release tribunal https://twitter.com/YsabelleStewart/status/765508280873615360/photo/1 *Document Chalder's statement about the Cochrane study as not independent to the Cochrane page *Include key findings re Ross Anderson, witness for the PACE study, http://www.twitlonger.com/show/n_1sp0pjo\ http://www.twitlonger.com/show/n_1sp0pjo https://twitter.com/chezboo2/status/765540769016848384/photo/1 https://twitter.com/cheshfr/status/765606851262222341/photo/1 *Add https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623988/fs50600710.pdf http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/* *Add https://www.facebook.com/notes/peter-kemp/the-pace-trial-spinning-the-results-to-the-media/1206334246049385- on his page from blog http://www.meresearch.org.uk/news/ahrq-review/ *Add http://www.occupycfs.com/2016/05/12/pace-gate/ *Add http://www.meaction.net/2016/05/14/racianello-pace-obfuscation-will-continue-until-we-are-all-dead/ https://peterkempblog.wordpress.com/2016/09/10/pace-trial-participants-were-they-exploited/ *Add Peter Kemp blog on SMC to SMC and PACE pages https://peterkempblog.wordpress.com/2016/09/23/the-science-media-centre-and-the-pace-trial-a-deceptive-partnership/ *Add http://www.statnews.com/2015/12/23/sharing-data-science/*Add article by a QMUL student critical of the failure to release data http://theprintnews.co.uk/2016/01/scientists-demand-transparency-on-pace-trial/ *Add http://blogs.bmj.com/bmj/2015/12/16/richard-smith-qmul-and-kings-college-should-release-data-from-the-pace-trial/ http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html *Add Racaniello quote "sham" https://twitter.com/knittahknits/status/770311882926358528 *Ensure Richard Horton / Lancet / PACE pages include this pivotel Horton quote https://twitter.com/postersandme/status/766265142795526144/photo/1 *Add Michael VanElzakker quotes https://twitter.com/MBVanElzakker/status/765678606425198592 and https://twitter.com/MBVanElzakker/status/765686260195332096 *Add blog on data release https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/ *Add Virology blog podcast that discusses PACE https://twitter.com/TomKindlon/status/768256875338969088?s=09 *Update blood donation page with http://www.nhsbt.nhs.uk/news-and-media/news-archive/news_2010_10_07.asp and https://twitter.com/velogubbed/status/727601250473259009 and https://aprescriptionforme.wordpress.com/2015/06/18/can-people-with-m-e-give-blood-and-organs/ ===PACE tasks Done?=== *Add PACE protocol http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf *Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter1.pdf *Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter2.pdf *Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter3.pdf *Add http://www.wolfson.qmul.ac.uk/images/pdfs/participantsnewsletter4.pdf *Add http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00114-5/fulltext *Check this Lancet editorial from 2011 is referred to on the PACE trial page http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60696-X/fulltext *Add James Coyne's Belfast talk video to his page and the PACE page https://www.youtube.com/watch?v=8jHRNxMOAjA&feature=youtu.be *Add https://jcoynester.wordpress.com/2016/03/26/we-dont-share-data-why-peter-whites-wall-street-journal-letter-can-be-ignored/ to PACE page on data release *Add https://jcoynester.wordpress.com/2016/03/20/why-the-cochrane-collaboration-needs-to-clean-up-conflicts-of-interest/ article criticising Cochrane to his page, PACE page & Cochrane page *Add https://jcoynester.wordpress.com/2016/01/05/undisclosed-conflicts-of-interest-in-a-systematic-review-protocol-of-interventions-for-medically-unexplained-symptoms/ *Add https://jcoynester.wordpress.com/2016/01/02/glimpses-into-the-assault-on-data-sharing/ *Add https://jcoynester.wordpress.com/2015/12/22/recognizing-when-protecting-patient-privacy-is-mere-excuse-for-not-sharing-data/ *Add https://jcoynester.wordpress.com/2015/12/18/kings-college-london-stalls-some-more-reiterating-refusal-to-release-the-pace-trial-data/ *Add http://www.virology.ws/2016/01/04/trial-by-error-continued-questions-for-dr-white-and-his-pace-colleagues/ *Add http://www.virology.ws/2015/12/17/a-request-for-data-from-the-pace-trial/ *Add http://www.virology.ws/2015/12/22/revisiting-the-plos-one-economics-analysis-of-pace/ *Add statements about Aus PACE data demands **http://sacfs.asn.au/news/2016/04/04_05_letter_from_mecfs_australia_sa_inc_to_the_queen_mary_university_london.htm **http://forums.phoenixrising.me/index.php?threads/tell-our-charities-qmul-must-release-pace-data.42767/page-8#post-711379 *Add this dental ME/CFS guide https://twitter.com/TomKindlon/status/715923546778824705?s=09 (maybe to home page section containing patient guides?) *Add article to Vitamin D and Microbiome pages https://cfsremission.wordpress.com/2016/04/02/vitamin-d-and-the-microbiome/ *Make sure this RNase L study is included. https://www.ncbi.nlm.nih.gov/pubmed/8148461 *Add http://www.meaction.net/2015/12/21/nih-considering-ampligen-and-rituximab-trials/ *Add Janet Dafoe talk to her page https://www.youtube.com/watch?v=BnGcdbnp4I4&feature=youtu.be *Add podcast link https://twitter.com/MBVanElzakker/status/734277452009201664 *Add to mitochondria, naviaux and OMF pages http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/ *Add https://www.scimex.org/newsfeed/closer-to-a-full-understanding-of-chronic-fatigue-syndrome *Add categories for all main page entries (in preparation for move to use category listing extension) ** please can someone post an accurate list of the category names --[[User:Suelala|Suelala]] ([[User talk:Suelala|talk]]) 22:53, 12 March 2016 (PST) ** Full list of categories can be found here: http://me-pedia.org/wiki/Special:Categories --[[User:Samsara|Samsara]] ([[User talk:Samsara|talk]]) 15:10, 23 June 2016 (PDT)
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