(PACE Trial, etc.) Misleading medical research underpins disability cuts - Centre for Welfare Reform

[Esther12]

I think it applies to the recovery paper as well, Esther. e.g. A patient with an SF-36-PF score of 60 could be classed as 'recovered'.

Yes, but that's only one of the outcomes. For the PACE recovery paper patients can no longer fulfil the trial entry criteria, and have to have a self-rated CGI or 1 or 2. It's a bit of a stretch to claim that they had got worse.

 

[user9876]

Yes, but that's only one of the outcomes. For the PACE recovery paper patients can no longer fulfil the trial entry criteria, and have to have a self-rated CGI or 1 or 2. It's a bit of a stretch to claim that they had got worse.

Or a doctor rated CGI score if they didn't give a score

 

[Bob]

Yes, but that's only one of the outcomes. For the PACE recovery paper patients can no longer fulfil the trial entry criteria, and have to have a self-rated CGI or 1 or 2. It's a bit of a stretch to claim that they had got worse.

I think a participant could theoretically deteriorate on both primary outcomes if, for example, their main symptom was no longer fatigue so they no longer fulfilled Oxford. It's a bit of a technicality, but still possible. And they could deteriorate on either primary outcome if the other primary outcome score caused them to no longer fulfil the entry criteria. If deterioration on either or both primary outcomes was permissible for a recovery then I think it's very fair to say that "you could even get worse and still be counted as having 'recovered'".

 

[Esther12]

If deterioration on either or both primary outcomes was permissible for a recovery then I think it's very fair to say that "you could even get worse and still be counted as having 'recovered'".

If the PACE researchers were challenging that claim in private though, they could fairly make it seem misleading. It's a tricky one when only they get access to the important meetings behind closed doors.

 

[Tom Kindlon]

I've now read quite a chunk of this report, and... wow, wow, wow, wow, wow... this is an exceptional project...

It's an impressive report; it's well argued, and its exceptionally well researched, and meticulously referenced. And the author creates a seamless narrative while citing a large number of sources.

It focuses especially on the corruption surrounding the biopsychosocial model, in a political, historical and academic context. And I've learned quite a lot from it. It illuminated (with a broad context) quite a number of issues that we often talk about, and I found myself saying "aha", "aha", "aha", throughout the text as I recognised behaviours and as the wider context explained much of the behaviour of the psychiatric lobby to me. I found it quite an eye opener. The wider context makes it all seem even more corrupt than I had imagined!

It raises all sorts of issues relating to: the issue of non-blind trials and subjective outcomes; the biopsychosocial model; bad research practices; false/misleading research results; withholding data; misleading media reporting, etc.; and how PACE relates to these issues. It discusses how the research evidence base for the biopsychosocial model can't be relied upon, because the research is flawed, but that the academic establishment requires it to be artificially propped up because e.g. careers rely on it. To do this, it says that patients are belittled, denigrated and targeted in a campaign to undermine them. It uses PACE as an example for all of these discussions.

And it discusses the implications of false research outcomes, for patients, social security, the welfare state, the insurance industry and privatization of welfare benefits. It implicates PACE and associated conflicts of interest. And it does so in the context of a history and paradigm of the biopsychosocial model and politics.

It mentions and references many recent events, such as the FOI tribunal and the latest sympathetic blogs that have been written about PACE.

It's very interesting and it's clearly written so it's easy to read.. but if you're not up to tackling the full report, it's worth having a quick read of the one-paragraph "About the Author" and "Acknowledgements" at the very beginning. And read the forward and summary if you're feeling more adventurous. The list of references is also interesting.


Full report:
http://www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

The report is introduced, here:
http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html

With a press release, here:
http://www.centreforwelfarereform.org/news/misleading-mability-cuts/00270.html

I have just finished reading this and think it is most excellent also.

It is easy to make mistakes but don't recall any mistakes in this piece.

The author also doesn't tend towards hyperbole: he makes strong points and accusations but these are always (or nearly always?) backed up by evidence.

I can't recall the details now but the author did ask for my input before it was published. I'm not sure that what I said made much difference to the final version. I recall being very impressed with it at the time.

I think it makes strong points on the PACE trial, but also on disability benefit reform and makes interesting points to link the two together.

I highly recommend people read it and encourage people to highlight it to other people.

I've now added it to my own signature.

 

[wastwater]

I wonder what will happen in the future after Brexit,will things get better or will they wheel out a new level of hell

 

[AndyPR]

I wonder what will happen in the future after Brexit,will things get better or will they wheel out a new level of hell

With the Tories swinging to the right and Labour fighting with themselves at the moment? If it doesn't get worse for us I'll be hugely surprised, even if austerity is eased and public spending is ramped up to try and generate growth, I don't see the Tories changing their line of bashing those whose only option is to try and use the benefit system to survive.

 

[Tom Kindlon]

https://twitter.com/i/web/status/763870622434881536

 

[Tom Kindlon]

https://twitter.com/i/web/status/765296238057127937

 

[Tom Kindlon]

https://twitter.com/i/web/status/765305480130490368