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==Content to add== 1. [[Simon Wessely]] uses PACE criticism to portray himself as victim of abuse - Referring to a 'group of activists' with CFS/ME, he stated "[t]hese people are sulphurous, vicious, horrible." "Since PACE was published this has become more intense, and at present the police are looking into two cases in which specific threats have been made to my physical safety. " Nigel Hawkes interview as cited on Wessely's page '''FOIA - no threats to researchers proved ''' tribunal hearing proves no PACE researchers (including Wessely - who was a center manager?) had any direct threats at this point - showing Wessely led in interview about police investigating such threats - note in interview or includes pic of message saying "I hope you die" - not a threat - [http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF ICO FOIA source] p36-37 "no direct threats", p30 "activists" as a disparaging term, p19-20 comparison with animal rights activists here (and in previous media by [[Esther Crawley]], [[Simon Wessely]], possibly [[Trudie Chalder]] is baseless according to judgments on p36-37). Consider adding to [[Stigma]] page. ''Notjusttired'' --- 2. [https://qmro.qmul.ac.uk/xmlui/bitstream/handle/123456789/15106/White%20planning,%20implementation%20and%20publication%202015%20Published.%20pdf The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial Peter D. White,1 Trudie Chalder,2 Michael Sharpe] Notjusttired [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:44, 3 December 2018 (EST) 3. Consider covering nasty tweet from [[Michael Sharpe]] (since deleted) about Alem Matthees and other activists and their FOI act requests and doubting they are sick of they can do this / comment relating to mental stability - see letter demanding apology from over 100 people on [http://virology.ws virology] [[User:Notjusttired|notjusttired]] ([[User talk:Notjusttired|talk]]) 11:44, 3 December 2018 (EST) Actigraphy article by Lucy (ex Lancet) https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/ [[User:Ollie|Ollie]] ([[User talk:Ollie|talk]]) 03:17, 16 May 2018 (PDT) FOIs https://www.whatdotheyknow.com/user/g_ryan https://www.dropbox.com/s/gdcdwlj4kyq3x2t/R%20-%20PACE%20Trial%20application%20150218.pdf?dl=0 To add reference from MSM about impact on bio research of the PACE trial http://www.sciencealert.com/chronic-fatigue-syndrome-low-energy-production-in-cells-metabolic-disease http://www.dailymail.co.uk/health/article-5058807/People-chronic-fatigue-syndrome-exhausted.html Regarding the peer-reviewed papers criticizing the trial. It would be good to have all of them (or links to where they are on this page) in a single section that is linked to from the table of contents. (I came to check to see the size of the list and did not find the section.) We should include links to the SMC "expert opinions" for each of the papers.[[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 04:38, 29 November 2015 (PST) We should include a link to a full copy (hosted where?) of the PACE "Manual for Therapists" (are there separate manuals for CBT/GET?). PACE web site copies deleted. [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 04:38, 29 November 2015 (PST) And perhaps include notable quotes from the papers/manuals like this https://twitter.com/batteredoldbook/status/670579432483090433/photo/1 [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 04:38, 29 November 2015 (PST) We should also add notable criticisms from Malcolm Hooper, not sure yet where to find them. [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 04:39, 6 December 2015 (PST) More links to consider using as references: Invest in ME criticism http://www.investinme.org/IIME-Newslet-1511-01.htm RetractionWatch response re recent paper data release refusal http://retractionwatch.com/2015/12/12/weekend-reads-what-do-phds-earn-does-peer-review-work-collaborations-dark-side/ https://jcoynester.wordpress.com/2015/12/12/formal-request-to-plos-one-to-issue-an-expression-of-concern-for-pace-cost-effectiveness-study/ https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf http://www.ncbi.nlm.nih.gov/pubmed/22870204#cm22870204_13300 https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment#PACE_trial [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 03:16, 13 December 2015 (PST) Another Coyne FoI blog to add https://jcoynester.wordpress.com/2015/12/13/why-i-dont-know-how-plos-will-respond-to-authors-refusal-to-release-data/ [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 02:18, 14 December 2015 (PST) PLOS response to data request. http://www.plosone.org/annotation/listThread.action?root=87754 and Coyne blog about it. https://jcoynester.wordpress.com/2015/12/15/plos-one-response-to-concerns-about-kings-college-refusal-to-share-pace-data/ [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 06:10, 15 December 2015 (PST) Consider including this chart of the PACE data (by patients, who?). https://twitter.com/Katiissick/status/676317109685587968?s=09 [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 06:26, 15 December 2015 (PST) More from Jonathan Edwards, https://twitter.com/sandwichpickle/status/676789963917275136/photo/1 [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 08:43, 15 December 2015 (PST) Chronology from Malcolm Hooper http://www.meactionuk.org.uk/PACE-Trial-Complaint-Chronology-FINAL.htm [[User:Olliec|Olliec]] ([[User talk:Olliec|talk]]) 08:36, 16 December 2015 (PST) ---- These are the main PACE trial papers, published to date: 2007 Published protocol:<br> White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group. <br> Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy.<br> BMC Neurol. 2007; 7:6.<br> http://www.biomedcentral.com/1471-2377/7/6 2011 Main PACE trial paper:<br> White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O'Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M; PACE trial management group.<br> Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.<br> Lancet. 2011; 377:823-36.<br> http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract 2012 Cost-effectiveness analysis (Includes employment and welfare benefits data):<br> McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD.<br> Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: A cost-effectiveness analysis.<br> PLoS ONE 2012; 7:e40808.<br> http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0040808 2013 [Alleged] "Recovery" paper:<br> White PD, Johnson AL, Goldsmith K, Chalder T, Sharpe MC.<br> Recovery from chronic fatigue syndrome after treatments given in the PACE trial.<br> Psychological Medicine 2013; 43:2227-35.<br> http://journals.cambridge.org/abstract_S0033291713000020 2013 Statistical Analysis Plan:<br> Walwyn R, Potts L, McCrone P, Johnson AL, DeCesare JC, Baber H, Goldsmith K, Sharpe M, Chalder T, White PD.<br> A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan.<br> Trials 2013; 14:386.<br> http://www.trialsjournal.com/content/14/1/386 2014 Adverse events and deterioration:<br> Dougall D, Johnson A, Goldsmith K, Sharpe M, Angus B, Chalder T, White P.<br> Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome.<br> J Psychosom Res. 2014; 77:20-6.<br> http://www.sciencedirect.com/science/article/pii/S0022399914001883 2015 Mediation Analysis (contains the fitness step test results):<br> Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial.<br> Chalder T, Goldsmith KA, White PD, Sharpe M, Pickles AR. (2015)<br> Lancet Psychiatry 2015; 2:141β52<br> http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2814%2900069-8/abstract 2015 Two Year Follow Up.<br> Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD.<br> Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial.<br> Published Online: 27 October 2015.<br> DOI: http://dx.doi.org/10.1016/S2215-0366(15)00317-X |<br> http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/fulltext ---- There are also some minor PACE-related papers: Lawn T, Kumar P, Knight B, Sharpe M, White PD. (2010)<br> Psychiatric misdiagnoses in patients with chronic fatigue syndrome.<br> JRSM Short Rep. 1:28. Cella M, Sharpe M, Chalder T. (2011)<br> Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale.<br> J Psychosom Res. 71:124-8. Cella M, White PD, Sharpe M, Chalder T. (2013)<br> Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome.<br> Psychological Medicine 43:375-380. doi:10.1017/S0033291712000979 Bourke JH, Johnson AL, Sharpe M, Chalder T, White PD. (2014)<br> Pain in chronic fatigue syndrome; response to rehabilitative treatments in the PACE trial.<br> Psychological Medicine 44:1545-52 doi:10.1017/S0033291713002201 Cox D, Burgess M, Chalder T, Sharpe M, White P, Clark L. (2013)<br> Training, supervision and therapists' adherence to manual-based therapy.<br> International Journal of Therapy and Rehabilitation 20:180-186.
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