foi

See also News from Scotland _________________ Moved from the News from the MEA thread. not news from MEA as such; but anyone know about this person https://www.wandabelisle.com/ according to her website " FEATURED on

A year ago, @Arvo made this interesting post on the Research Funding thread. There is the question of why there is an MRC file on ME that is redacted until 2071. Is this accurate? Is there any mechanism to find out why the file is not available? And also the question of MRC Board members. Is...

Disability News Service DWP set to waste thousands fighting release of two secret reports The Department for Work and Pensions (DWP) is set to waste thousands of pounds of public money fighting two rulings by the information commissioner that it must release secret reports affecting millions...

Posts have been moved from 3 threads: UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion United Kingdom: Action for ME (AfME) news I don't tweet so please excuse format. This is probably the...

NOT a recent FOI but from 2015 following the IOM report; many familiar names, thought it might be of interest here. https://www.whatdotheyknow.com/request/357691/response/883778/attach/2/FOI%20EH73066%20Redacted%20documents%20for%20release.pdf

rest of article here https://www.wired-gov.net/wg/news.nsf/articles/nice+and+cochrane+sign+collaborative+agreement+to+deliver+living+guideline+recommendations+01092021120500?open

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...

FOI Response from Bristol about LP Study; Correction in BJGP about MUS Tuller has received a response to his FOI request with the University of Bristol about the LP-study and has learned: The university was informed on Feb 8.2018 that the journal had raised serious questions about the study...

Abstract The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy. This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from...

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...

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

EA/2018/ 0142 John Peters v the ICO and University of Bristol. The First Tier Tribunal finds for the Appellant. And orders the release of the SMILE trial data. Unanimous decision. Date: 11 March 2019 Promulgated: 12 March 2019 Decision here...

Anyone got the follow-up info on this? A record of the communication and issues with the CCC (according to the author's views)? Which authors were contacted? Carruthers? From one of the PACE trial steering committee and data ethics committee meetings it states: From Monday 28th Sept 2004...

Our local NHS provider and lead commissioner have stated they will be going through a 'Benchmarking' exercise... So I thought I would do a little digging taking into account the current parlous state of NHS Services for ME and CFS... any thoughts would be welcome ...

In response to the Expression of Concern, the Statement of the Authors says: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public...

Only just seen this (I google less frequently than I used to): https://www.whatdotheyknow.com/request/cfs_the_volume_of_objective_data#outgoing-766327 Only interesting for how little info they provide. It seems that all that is needed for QMUL to decide that they should not release data...

I recently asked the Metropolitan Police Service about the existence of an 'activist list', alleged in an article by the late Michael Hanlon, that appeared in the Sunday Times Magazine in May 2013. Putting it briefly, I was told in two replies that I needed to supply "further information". I...

Hello, First post, here goes... I recently placed a number of Freedom of Information requests with the funders of the PACE trial, named on the QMUL website. All the funders replied to my requests. All four named funders are below, with the donations they disclosed to me: The Department...

I was looking for something else and found this. Only really of interest because Brown/SAS are arguing here against restrictions to the use of the FOIA at the same time that they were helping promote that narrative that the PACE researchers were being harassed by FOI requests. Thought I'd post...