Info obtained using FOI on PACE Trial application for funding in 2002

[Dolphin]

I have been given permission to post this.

https://www.dropbox.com/s/6m1sa4gpae8n4dp/R - PACE Trial application 010917 (1).pdf?dl=0

The person who sent it to me suggested it be noted:
There is a review on the bits redacted. Also, you could perhaps suggest that while anyone is of course free to pursue FOIs, flooding the MRC will not help our case.

 

[Dolphin]

I'm attaching the PACE Trial Identifier that was released more than a decade ago. I'm not sure how the two documents compare.

 

[Dolphin]

The official protocol published in 2007 is available here:
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-7-6

The more detailed protocol obtained using a freedom of information request is available here:
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf

 

[Esther12]

Looks like they've redacted all of the stuff from Action for ME.

Action for ME need to start being open about their past actions and mistakes before people will be able to trust them again. It would be interesting to see the MRC's justifications for their redactions.

 

[JohntheJack]

Looks like they've redacted all of the stuff from Action for ME.

Action for ME need to start being open about their part actions and mistakes before people will be able to trust them again. It would be interesting to see the MRC's justifications for their redactions.

Though it does state AfME were paid a consultancy fee, which I had not known.

Edit: or at least such a fee was budgeted for.

 

[Woolie]

Four things really strike me about this doc.

First, the main PIs' research records were pretty humble prior to PACE. They really made their careers on PACE.

Second, I find it incredibly odd that the information about other sources of funding available for the project was redacted. How can they justify hiding such information? One is left to infer that they are hiding DWP or insurance industry support.

Third, why is so much of the document redacted? What could be sensitive about a description of the proposed project? The only information that should be redacted is personal information. @Esther12, how can you tell its AfMe stuff?

Fourth, even what's left in this doc shows the AfME's complicity in this trial in all its shame. They would have been better to refuse to be involved. They allowed themselves to be used in a rubber stamping exercise. This is another lesson in the long lines of lessons about why patient organisations should stay out of the Big Tent. This enables them to be misused, to support researchers' claims that they had 'patient consultation'.

@charles shepherd, I hope the MEA is fully aware of how being part of the CMRC could be misused against patients. Getting out sends a strong message, that this research collaboration does not have patient support.

 

[JohntheJack]

I asked them to review their decision and they have now revealed some more information.

They are still in discussion about revealing the peer reviewers.

Seems AfME wrote a letter in support. And Wessely was a 'collaborator'.

Any thoughts on whether it's worth appealing to the ICO for any of the redacted information?

https://www.dropbox.com/s/irrd19retjtmnzl/R - PACE Trial application 070218.pdf?dl=0