pace trial

The minutes for the first two meetings of the TSC (attached) have been available for some years. I was always struck by the entries on COI. All agreed they had none. We know that the PIs had one. Last year I asked QMUL for the statements. They replied with the minute from each of the first two...

'Cargo Cult'; I came across this in the 'Magical Medicine: How to make a disease disappear' article" asking if PACE might be an example and that only time would tell. I'm inclined to think it (PACE) is along with the majority of the Wessely school 'research' (I am not familiar enough with all...

The Herald: ME sufferers welcome 'unreliable' stamp on exercise report http://www.heraldseries.co.uk/news/16115734.ME_sufferers_welcome_criticism_of_report_that_told_them_to__exercise_more_/

https://actualite.housseniawriting.com/sante/syndrome-fatigue-chronique/2018/03/23/syndrome-de-fatigue-chronique-que-conclure-de-la-reevaluation-de-lessai-clinique-pace/26233/ Peut-être y a-t-il quelqu'un qui parle couramment le français et qui peut en faire l'écriture. J'ai déjà eu un bon...

I have now received these minutes. TSC: https://www.dropbox.com/s/1b86k0pvnymko16/TSC.zip?dl=0 TMG: https://www.dropbox.com/s/jhxmivxyn9k8lid/TMG.zip?dl=0 I am tired and have only skimmed through them. Major point is how little there is on the changes in protocol. TSC #8 File 20090429 TSC...

This briefing was prepared by a Science for ME working group of patients, most with a background in science and mathematics. The authors, including Tom Kindlon, Sean Kirby and Graham McPhee, have published over twenty papers and letters of expert commentary on the PACE trial and related matters...

https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ I like the Canary because i like the 'call it out' attitude, but i do wish they wouldnt make such basic factual errors as calling it the 'PACE trials' -...

I’ve just posted a blog about the important new paper from @Carolyn Wilshire @Tom Kindlon, David Tuller and others that exposes serious flaws in the PACE Trial PACE trial’s findings fundamentally challenged by a new study In a nutshell: Analysing PACE the way the authors originally promised to...

http://www.bbc.co.uk/news/health-43490335

Just had this ruling pop up on google: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2258454/fs50696884.pdf I vaguely remember some controversy about someone (Aylward?) failing to properly declare his COI? I can't remember the details though. I think I may have seen someone...

Free full text: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

Action for ME recently joined the forums. On another thread, Clare from Action for ME (AfME) wrote: Thanks for being willing to look at questions, Clare. A key one for a lot of people is AfME's current attitude to the PACE trial. AfME signed the joint open letter asking QMUL to release the...

We think we have got what we need now. Thanks. I'm working with a few people to write something about the PACE trial. Can anyone recall, ideally with a link, NICE saying previously they were not updating their guidelines due to the results of the PACE trial? I think it refers to keeping CFS/ME...

Moderator note - three threads on questions in the UK House of Lords and House of Commons have been merged at the request of the original posters "The Countess of Mar Deputy Chairman of Committees, Deputy Speaker (Lords) To ask Her Majesty's Government whether the Department of Health...

Royds Withy King - The PACE trial – “one of the biggest medical scandals of the 21st century” Posted by James Millar Craig https://www.roydswithyking.com/pace-trial-scandal-me-cfs/

Here is my analysis of the response from Caroline Dinenage MP, Minster of State for Care, during the Westminster Hall Debate on PACE and its effects on people with ME: https://www.meaction.net/2018/02/26/read-about-the-westminster-hall-debate-on-the-pace-trial-and-its-effects-on-people-with-me/...

This is for U.K. residents only. The PACE trial scandal and the failings of both QMUL and Bristol Uni, have exposed a gap in UK research governance arrangements which unscrupulous researchers and their sponsoring Universities have exploited. In October 2017, the Commons Science & Technology...

The Norwegian biology professor Kristian Gundersen has several times criticised ME-patients for criticising research. First time was last year where he defended PACE against its criticism and warned against ME-patients being listened to. @Jonathan Edwards wrote a response. Last week he...

Just received decision in the post. Not read it all but ICO has ordered release of TSC and TMG minutes.

In the debate on the PACE trial yesterday, the Cochrane review was again cited as validation of the PACE trial results ".........scientists as part of normal research collaboration, including the internationally respected research organisation Cochrane, which independently validated the...