FOI to QMUL: Action as a result of the admission the PACE analysis was misleading?

[Esther12]

Dear Queen Mary, University of London

I request copies of information, pertaining to the major flaws and misleading claims, made by Peter White, in relation to the PACE trial, including but not limited to any proposed retractions/corrections etc of the results, published to date.

I have a copy of the letter by Peter White and the 2 other principal investigators Trudi Chalder and Micheal Sharpe, published on the Queen Mary University of London, news website, and don't need a copy of their admission that changing their analysis protocol from the one they published in the BMJ in 2007, inflated their results by a factor of three.

https://www.youtube.com/watch?v=oyKQjDim...A video on recent PACE and Bristol events.
http://www.virology.ws/2016/09/21/no-rec...
https://www.statnews.com/2016/09/21/chro...

Yours faithfully,

Dave

https://www.whatdotheyknow.com/request/action_as_a_result_of_the_admiss

Will be interesting to see what, if anything, gets released.

 

[barbc56]

I request copies of information, pertaining to the major flaws and misleading claims, made by Peter White, in relation to the PACE trial, including but not limited to any proposed retractions/corrections etc of the results, published to date.

Just to play devil's advocate, if these researchers don't think there are "flaws"or "misleading claims" then that's the part of the message that will stand out to them and the point of the message is more likely to be lost. This ties into their misperception that the request is "vexatious".

They just don't get it and that's what makes all this so frustratingly difficult to sort out. I think this is a huge obstacle when we try to make a point.

I'm wondering if leaving out words such as "major flaws", "misleading claims" and simply making an emphatic request(s) that information is wanted might be more effective in the long run and save such phrases for another venue.

We need to persevere and not back down but at the same time be cognizant of their mindset.

My statements are more about PR strategies as I definitely applaud the request.

Thanks to @Esther12 for keeping us updated.

 

[Esther12]

Just to play devil's advocate, if these researchers don't think there are "flaws"or "misleading claims" then that's the part of the message that will stand out to them and the point of the message is more likely to be lost. This ties into their misperception that the request is "vexatious".

It's pretty difficult for anyone to claim in good faith that there were no flaws or misleading claims, but in some ways it doesn't seem the most carefully of phrased FOI requests. That could help lead to a revealing response though.

Having QMUL say that they are not aware of any flaws or misleading claims would be pretty interesting in itself. The response from QMUL as an institution, as opposed to from just White, is going to be worth watching. PACE is indefensible in so many ways, but it's not clear that QMUL has conducted any sort of independent investigation into this. I'm not sure if they realise that an attempt to avoid acknowledging the problems here could lead to trouble for them for years and years to come.

 

[barbc56]

Ah, I didn't pick up that this is addressed to an institution and not a person. Different ballgame. I get all these acronyms mixed up and living in a different country sometimes doesn't help my addled mind picking up on these things. So I certainly appreciate any clarification.

Thanks!

 

[user9876]

I think the question is have others in QMUL raised any concerns. QMUL were happy to spend money backing PACE but did any academics raise concerns etc. It would be concerning if no one did because it suggests the didn't bother to look at the quality of research before trying to suppress research and stigmatize patients.

 

[Esther12]

Response from QMUL saying they have no information.

https://www.whatdotheyknow.com/requ...dmiss?nocache=outgoing-604920#outgoing-604920

I wonder if they're using the rather loose phrasing of the request to avoid giving out information.

That person has also made a number of other FOI requests about the PACE trial that can be seen by going to his profile, but I couldn't see any useful info being released on them so far.

There's also been this PACE FOI that seemed to request a lot of info already released: https://www.whatdotheyknow.com/request/pace_results_for_cfs_do_they_app#incoming-756841

There's also been this new FOI:

Dear Queen Mary, University of London,

I request a copy of the financial audit of the 5 million pound PACE trial, for which the MRC says you are responsible.

Actions taken by QMUL to investigate the misleading claims and potentially fraudlent activities carried out by the PACE personal.

Steps and procedures put in place to prevent future publications of "massaged data".

Actions taken by QMUL to reverse the harm and adverse impact caused to people with ME/CFS, caused by the false claims by PACE authors.

http://www.virology.ws/2016/09/21/no-rec...
https://www.statnews.com/2016/09/21/chro...
http://www.medscape.com/viewarticle/871552

Yours faithfully,

Freda Frogget

The symptom heterogeneity, combined with the lack of specific biomarker, has resulted in skepticism among some clinicians that the condition is biologically, rather than psychologically, based.
However, studies during the last decade point to biological underpinnings. At the biennial IACFSME conference, more than 100 papers were presented that contribute further to the evidence base, according to Anthony L. Komaroff, MD, professor of medicine at Harvard University, Boston, Massachusetts, and editor-in-chief of the Harvard Health Letter.
"Case-control studies comparing patients with ME/CFS to both disease comparison groups and healthy control subjects find robust evidence of an underlying biological process involving the brain and autonomic nervous system, immune system, energy metabolism, and oxidative and nitrosative stress," Dr Komaroff said in a conference summary at the end of the meeting.
He added, "To those people out there who still question whether there is really anything wrong in this illness, my advice to them would be try consulting the evidence."

https://www.whatdotheyknow.com/request/fraudulent_action_by_qmul#incoming-903354

QMUL argue that this forum is the nexus of vexatious FOI requests... if any requesters are reading I would like to thank them for trying to gain the release of useful PACE info, but also encourage real care with the way FOIA requests are posed, to try to avoid anything that could seem polemical. To me it seems best to try to use the language of the organisation you are requesting info from, and focus on just making clear exactly what info you're after (to leave no wriggle room).

It's possible the QMUL administration are genuinely unaware of the fact that misleading claims were made by the PACE trial's researchers! eg: Instead of talking about 'misleading' claim, it could be better to talk about protocol deviations?

I don't really know, and I should probably make my own requests if I think I can do a better job, but I am very nervous about the way QMUL has tried to use very minor mistakes/misphrasings in some requests to try to dismiss all PACE FOI requests... if not for the impressive work of Matthees they probably would have got away with that. When dealing with UK organisations, it's worth being extra gentle imo, and realising how much prejudice is still against us.

 

[Daisymay]

It's pretty difficult for anyone to claim in good faith that there were no flaws or misleading claims, but in some ways it doesn't seem the most carefully of phrased FOI requests.

There has been no "good faith" shown by QMUL, the authors, those funding the trial or those publishing the trial. I have no expectation of any of them now showing good faith.

 

[Esther12]

There has been no "good faith" shown by QMUL, the authors, those funding the trial or those publishing the trial. I have no expectation of any of them now showing good faith.

No - that does make it more difficult, and more important, to try to get things right. We need an advisor!

 

[slysaint]

I love the way it's addressed to
'Dear Queen Mary, University of London,'
sadly she died some time ago and I don't think she ever lived at the University of London