• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

QMUL/PD White refuse request for data for PACE Trial's original primary outcome & recovery criteria

Tom Kindlon

Senior Member
Queen Mary, University of London, where the PACE Trial's chief Principal Investigator, Peter D White is based, have refused to release the data (percentages) for the PACE Trial's three original primary outcomes and for the original recovery criteria, stating it would cost too much.

[Comment: Many of us believe that the results of the PACE Trial would look a lot different if such data was released e.g. estimate that the recovery rates are most likely in single figures (in terms of percentages) rather than the 22% Peter White, Trudie Chalder and Michael Sharpe published with the revised criteria].

This trial cost approximately UK£5 million of taxpayers' money.

In the House of Lords in February, it was stated by a government spokesperson that long-term follow-up studies (at 2.5 years) would be done on the PACE Trial data, so the claim there is no statistician to calculate the data is odd. Also, no fancy mathematics/statistics is required to get the data and the database was designed to collect the data.


http://bit.ly/1cuHxCD i.e. https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po_2

From: QM FOI Enquiries Queen Mary, University of London

23 December 2013

Dear Mr. Courtney

We have conducted a review of your request. The decision is that the information you have requested is not held. Insofar that it could be possible to calculate the data from what is held, your request would be refused under s.12 of the Freedom of Information Act 2000. This means that we estimate that to produce the particular data would exceed the appropriate limit as defined by the Freedom of Information and Data Protection (Appropriate Limit and Fees) Regulations 2004. Your request is therefore refused under s.12 of the FOIA.

For your information the appropriate limit is £450, calculated as the estimated cost of one person spending 18 hours in determining whether the information is held, then locating, retrieving and extracting the information. Section 12 of FOIA therefore makes provision for public authorities to refuse such requests.

The processes would include work of a statistician to perform the various programming and data file operations as well as the calculations to produce accurate data. Moreover, as there is no longer a statistician employed by the PACE trial, one would need to be recruited for this operation and trained.

The interim Research Data Management Policy to which you referred has been superseded, please see: [1]http://www.arcs.qmul.ac.uk/docs/policyzone/118815.pdf However, you will see that this is not applicable to research data such as that from the PACE trial anyway: “access to data that is associated with medical research will be governed by the relevant funder’s policies on datasharing”. Therefore, I refer you to the Medical Research Council’s Data Sharing Policy at: [2]http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/datasharing/Polic y/index.htm

If you remain dissatisfied you have the right to complaint to the Information Commissioner's Office; please see [3]www.ico.org.uk for details.

Yours sincerely

Paul Smallcombe Records & Information Compliance Manager


Visible links 1. http://www.arcs.qmul.ac.uk/docs/policyzone/118815.pdf 2. http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/datasharing/Policy/i ndex.htm 3. http://www.ico.org.uk/


Senior Member
Sth Australia
I think we all knew we wouldnt get that data!! We also all know why and its not for the reason they are saying.

There should be an outcry on so much money being sent when people cant even get basic data on this study.

Thanks Tom. I hope you keep being like a dog who wants its bone with all this....

Tom Kindlon

Senior Member
Most researchers I know love having an excuse to spin out yet another paper. Just saying...
I'm afraid your subtlety is a bit lost on me, Snow Leopard. Are you saying you think it shouldn't be difficult to get a researcher/researcher team that would be willing to access the data and publish a paper on the results?