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Information Commissioner's Office denies request for PACE Trial data. Frustrating ruling (March 9)

Dolphin

Senior Member
Messages
17,567
Request said:
On 1 November 2015, the complainant wrote to QMUL and requested the following information:

‘I would like to request, for each of the 4 treatment arms of the PACE trial, the 6 min walking test data

a) before treatment and b) (where available) at follow-up (52 weeks)

I appreciate that my previous request was denied due to it being deemed to require the creation of new data. This request has been carefully chosen to avoid that problem, consisting of a request to supply a list of numbers for each of the 4 treatment arms of the trial.’

https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
 

Dolphin

Senior Member
Messages
17,567
I noticed an error:
Background to this complainant’s request

15. On 28 March 2013 the complainant made a request for information concerning the 6 minute walking test (as reported in the original PACE paper), asking for mean and standard deviation results. QMUL responded that the information was not held.

16. On 3 September 2013 the complainant made a similar request for information concerning the trial (follow-up data for the 6 minute walking test including mean test times and standard deviations). QMUL initially applied section 14(2) of the FOIA asit considered the request was a repeat of the earlier one. However, following the Commissioner’s intervention, QMUL again confirmed it did not hold the requested information and the case was closed (case reference FS50533053).


This could make it look like it was a repeat request. However the earlier requests related to those classed as recovered


From: Anna Sheridan

28 March 2013



Dear Queen Mary, University of London and the PACE Trial Management Group

I have been following the PACE trial with interest for a number of years, both as an ME sufferer, and as the relative of two clinical psychologists involved in administering CBT.

I am particularly interested in the results of the 6 min walking test,(as reported in the original PACE paper) and would be grateful if you could provide me with mean and standard deviation results for those who, in your latest paper: 'Recovery from chronic fatigue syndrome after treatments given in the PACE trial.' are considered recovered. Please break these down, if possible into therapy type.

Thank you in advance

Yours faithfully,

Anna Sheridan (Dr)
https://www.whatdotheyknow.com/request/6min_walking_test_results_for_re


From: Anna Sheridan

3 September 2013



Dear Queen Mary, University of London,

I am writing to request follow-up data for the 6 min walking
test,(as reported in the original PACE paper). I understand that you have 'follow-up data on 72% of participants for this test' (White et al. 2013, Psychological medicine, and 2011). I feel that having data for almost three quarters of participants will still be of value.

I request this information as both a scientist and as an ME patient. As a scientist, my principle aim is to gain a complete understanding of the effect of any proposed treatment. As an ME patient, the distance that I can walk is extremely important to me, and any improvement that can be offered through treatment is of great interest.

There are two parts to my request. Firstly, could you please supply the mean 6min walking test time for all those who took the measurement, and were deemed 'recovered' as per one of the measures in your follow-up paper in Psychological Medicine.

Secondly could you please also provide the standard deviation for the mean. I would also like this data to be broken down into therapy type.

Regarding the concerns expressed in your Psychological Medicine Response: The data I request will be compared only to the data already published in the PACE trail (2011) paper, therefore any differences in protocol compared to the literature at large, are not relevant. In addition, your directions to patients that `You should walk continuously if possible, but can slow down or stop if you need to.’ (White 2013), will, I presume have been unnecessary for, and had no impact on, the patients for whom I request data, since they are, as you have stated, 'recovered'.

Yours faithfully,

Anna Sheridan (Dr)

https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
Don't miss these quotes!:

31. It has explained that one particular forum (the Phoenix Rising Forum) actively promotes the use of FOIA stating: “Let’s have some more FOI requests please…I always thought FOI requests were our best weapon and we need to play that card more strongly in all areas.”


38. The Commissioner has considered the evidence submitted by QMUL and is satisfied that the requesters do appear to be linked by their activity on Twitter, The Phoenix Rising Forum and their posts on various websites including the Whatdotheyknow website.
 
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Countrygirl

Senior Member
Messages
5,431
Location
UK
54. In such circumstances the Commissioner considers the ongoing opposition to the trial and repeated requests for data would undoubtedly cause disproportionate irritation and distress to Professor White and his colleagues.

So what really matters to the Commissioner is the irritation experienced by Prof Peter White and not the severe and permanent bodily harm inflicted on a very large group of vulnerable and very sick patients by the inappropriate and dangerous graded exercise programmes promoted by this fraudulent research. I think the Commissioner needs to review his priorities.
 
Messages
13,774
I've not had time to read this yet, but if that's all that is needed to consider requesters as being linked (an interest in the topic, and writing about it on forums where it is commonly discussed), then surely lots of the requesters for almost any information of minority interest are likely to be 'linked'. Academics working in an area will tend to be 'linked' in this way even if they really dislike and disagree with one another.

Actually I just checked: Anna as only made 21 posts here! By heck. The bad reputation QMUL are trying to give us seems to rub off on those innocents foolish enough to sign up pretty darn quick. I wonder if any other health condition has patients' biggest internet forum be used to undermine patient members in this way?

I shouldn't comment until I've read the decision notice.

Best wishes to Anna though. I did closely read two other 'vexatious' decisions, and both displayed really clear gaps in their understanding, as well as being quite unpleasant in the way that they dealt with patients trying to help others understand more about the evidence for their treatment decisions.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
They say that like it's a bad thing.

Yeah well we are all meant to be bad aint we... all those ME trouble makers!! who spend every once of energy they have trouble to cause problems. Its just another example of the crap directed towards us. Obviously they think we have no right at all to question any study on the illness we have.

54. In such circumstances the Commissioner considers the ongoing opposition to the trial and repeated requests for data would undoubtedly cause disproportionate irritation and distress to Professor White and his colleagues.

If they released the info people are wanting to know, they wouldnt be even then getting these requests of patients and others who are wanting to know..and Professor White wouldnt have to be feeling harrassed (unless he's hiding stuff with that data to cause an outcry about it). PACE trial has deeply affected our lives and it seems they arent the slightest aware of that and just want to protect the ones who did the study by not allowing the study to be further questioned.

Im sure the info would go all out there fast as after all, we are in the age of the internet... if he's feeling harrassed with requests, all the more reason to release the data and help the poor guy.
 
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