pace trial

Moderator note: Posts on this thread have come from three places, this thread and the following two threads. They have been copied or moved to keep the discussion in one place. Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19...

Before the approval of the PACE trial there were several similar failed submissions to the MRC - only when they added "Specialist" Medical Care and I think the involvement of Action for ME was the trial approved. Can someone point me to the rejected / failed trial applications? I *think* I...

I pursued this after the failure of PLOSONE to make the researchers hand over the data in compliance with the journal policy. The researchers relied on the REC. See Expression of Concern and Response here: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 I asked the...

On Royal Free website: CFS/ME research "This purpose of the PACE trial was to better understand the possible causes of chronic fatigue syndrome." Really? Since when? https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/ (see also Graded exercise...

The Royal College of General Practioners (RCGP) is having its Presidential election soon. https://www.rcgp.org.uk/about-us/news/2019/may/rcgp-announces-seven-candidates-for-college-president.aspx There are 7 candidates... Could we canvas & lobby the the candidates for their views on matters...

https://www.theguardian.com/society/2019/jan/19/abolish-work-and-pensions-department-demos-thinktank Link to Demos report hosting page, https://demos.co.uk/project/pathways-from-poverty/ and directly to the report...

https://www.meassociation.org.uk/2019/05/me-awareness-the-pace-trial-how-a-debate-over-science-empowered-a-whole-community-09-may-2019/

I first applied back in 2016. I went through review and then a complaint to the ICO and then all through last year I was in the process of an appeal to the FTT. The ICO switched right at the end to support me and QMUL settled, promising to send me the data, 'if they could'. Today I have just...

KCL also claimed that it doesn't hold the data in terms of the FOIA. The ICO upheld the KCL decision, so I appealed to the FTT. In the course of the appeal, the ICO switched sides. The FTT has affirmed that KCL does hold the data. It now has until the end of the month to provide them or argue...

Most of you have probably already seen these tweets, but I post them here for those of you who don't have Twitter or who missed them:

http://healthinsightuk.org/2019/04/22/the-claim-that-the-cure-for-the-crippling-fatigue-of-mecfs-was-to-change-your-mind-always-seemed-bizarre-now-it-really-is-on-the-way-out/ So glad he has taken up the mantle and run with it!

https://www.healthrising.org/blog/2019/04/17/tuller-bad-science-biopsycosocial-chronic-fatigue-me-cfs/

As he has cropped up in another thread, thought I would post Jerome's write-up about the release and initial re-analysis of the PACE data. Just to emphasise, this is from 2016...

Decision here. https://www.dropbox.com/s/kc9ezxfk51t1eu5/014%20040419%20Decision.pdf?dl=0

This open access rejoinder officially came out today. I thought I would highlight it in its own thread. https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x

Fréa Lockley: The establishment media has launched a vicious "war" on chronically ill people The media has upped the ante on a vicious and abusive war on chronically ill people. Doctors involved in the controversial PACE trial have lashed out, claiming they can’t continue their work because of...

Open Access Article here

Den syge på Fanø: Skal de kronisk trætte træne? google translation: The patient at Fanø: Should the chronically tired exercise? Please look beyond the dreadful title, as the article itself is rather good. Contains interview with David Tovey and the director of the National Board of Health...

Reuters: full article here: eta: link deleted please use this one http://archive.today/lwDNQ

Starts around 2.11.00 John Darvall. Interview with ME sufferer (ME for 20 years) Liz, who participated in pre PACE Frenchay trial in 2002. Mentions PACE trial and GET being discredited, #MillionsMissing campaign. Also talks to her husband re NICE guidelines and debate in HofC. good stuff...