The Centre for Welfare Reform: Major breakthrough on PACE trial (August 19) (well referenced)

[worldbackwards]

Oh but they can't resist the occasional peek, thrill-seekers that they are

Oh, the excitement.

 

[TiredSam]

I'll take the bet. Surely "... was forced to close his Twitter account" is now being added to the body of 'evidence'.

Ha! Easiest fiver I ever made .

Ask me how I knew that was going to happen . Go on, ask me ...

https://twitter.com/i/web/status/766955741001441280

 

[sarah darwins]

Ha! Easiest fiver I ever made .

Ask me how I knew that was going to happen . Go on, ask me ...

Oh ..... bottoms!

Go on, then. How did you know, smarty-pants?

 

[TiredSam]

Oh ..... bottoms!

Go on, then. How did you know, smarty-pants?

Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.

It was all in this thread here:

http://forums.phoenixrising.me/inde...h-authority-and-pace.41891/page-4#post-677661

 

[user9876]

As well as the PACE trial we should be concerned about the failures of various governance processes.

Concerns were raised with the MRC early on about things like the newsletter and outcome switching. They were dismissed by Frances Rawles who is their head of governance. These are some of the issues that David Tuller has written about and that have shocked scientists in the US. So the question becomes one of why did Rawles give dismiss concerns and give PACE a clean bill of health. What type of investigation did she do. Then we see her giving evidence to help keep the data private - the publication of such data may bring her judgement into question. We also have Joe McNamara at a meeting at the SMC where they agree to a follow a narrative of harassment to deal with FoIs, complaints and parliamentary questions. To me a government agency and public university is a real issue as they are basically saying lets accuse anyone who questions us as harassing us and thereby avoid public scrutiny (which is an important part of democracy).

From the QMUL perspective there seem to again be governance issues as were brought up in this report. Do members of the council know why patients and academics are unhappy; has QMULs management asked sufficient questions about the trial and the issues to justify spending 200k + vat on lawyers fees. Given the outcome of the tribunal I suspect not. I think that this should also have flagged up the overall issue of the trial with QMULs senior management and they should have looked more into the integrity of the way the trial has been conducted. QMUL as an institution is responsible.

But we have no evidence that QMUL understand or have tried to look at the issues that patients and academics have raised about the trial. Maybe they have but their responses suggest they have not bothered to look. This is what concerns me about a member of the council seemingly uninterested in understanding the issues over which they are making decisions. It seems like an approach to governance involving backing your friends and putting your fingers in your ears and singing la la la when an alternative view is put in place.

In QMUL looking at PACE they need to address issues of the conduct of the trial including outcome switching. They also need to address issues over the campaign to stigmatise patients who ask questions. Both are basic ethical questions. To date QMUL's management have shown no signs that they understand the issues or that they are willing to listen to the issues.

These are wider issues than just PACE and they should concern everyone and the press should be asking questions but they are silent. In part I think this is because patients have been stigmatize by the SMC campaign.

 

[Chrisb]

There is indeed an irony in how this mass hysteria, sorry I mean psychogenic conversion disorder, is spreading through QMUL and associates, as they all fall victim to a threat that isn't actually there, ie the young male sociopathic ME activist.

I think we should all be grateful that someone chose Bryan Kennedy QC to preside over this appeal.

His many years experience involved with the Bloody Sunday Enquiry will no doubt have enabled him to have a certain perspective on the dangers of ME activists.

 

[sarah darwins]

Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.

Not fair — you studied the form book Can I owe you the fiver?

Do members of the council know why patients and academics are unhappy; has QMULs management asked sufficient questions about the trial and the issues to justify spending 200k + vat on lawyers fees. Given the outcome of the tribunal I suspect not. I think that this should also have flagged up the overall issue of the trial with QMULs senior management and they should have looked more into the integrity of the way the trial has been conducted. QMUL as an institution is responsible.

Well said. QMUL do seem to be treating the whole thing as a political exercise in which the only goal is to win, and the welfare of patients not even considered. As you suggest, they seem blithely unaware of the reasons reasons why so many people, including many with serious academic credentials, are highly skeptical of the trial.

 

[justy]

I seem to be a bit late t the party (as always) so cant add anything interesting to what others have already said - just want to acknowledge what a great and thorough article this is.

 

[Kalliope]

Could someone please tell me a little about The Centre For Welfare Reform? Who exactly are they and are they considered a reliable source?

The article was splendid!

 

[Bob]

I'm not familiar with their wider body of work, but I certainly find their ME/CFS-related work to be highly researched and impressively accurate, with an exceptionally deep understanding of the issues.

Website:
http://www.centreforwelfarereform.org/

There's a previous thread about one of their earlier articles, here:
http://forums.phoenixrising.me/inde...ability-cuts-centre-for-welfare-reform.44078/

What we do
The Centre shares good ideas to make human rights real.

We do this by supporting an international fellowship to develop their ideas with others and publish them through our library andstore.

We receive no subsidies from government or private organisations, instead we work on projects and publications which are consistent with our goal.

Who we are
The Centre for Welfare Reform is a community of independent Fellows who are thinkers, innovators and leaders who have demonstrated a real commitment to equality and diversity.

Simon Duffy
Simon is the founder and Director of the Centre for Welfare Reform. He speaks regularly on television and radio about the welfare state and social policy. He is best known for inventing personal budgets and for designing systems of self-directed support. He works as a consultant and researcher with local social innovators and national governments.

Simon began work in the NHS and then went to work with Choice Support, where he led innovative work in social care on individualised funding and brokerage. After being a Harkness Fellow in 1994, Simon went on to found Inclusion Glasgow in 1996 and, following this, he helped establish several new organisations in Scotland, including Partners for Inclusion and Altrum. He also provided training in person-centred planning and supported living as a Director of Paradigm Consultancy.

From 1999 he began to develop self-directed support, as a system to reform the organisation of social care. He began work with North Lanarkshire Council and in 2003 he led the development of individual budgets and self-directed support in England as CEO of In Control. This work led to significant changes in social policy in England and Scotland, and in 2008 he was awarded RSA's Prince Albert Medal, and in 2011 the SPA Award for outstanding contribution to social policy.

Simon has a doctorate in moral philosophy and has written extensively on moral, political and social issues. Some of his key publications include Unlocking the Imagination (1996), Keys to Citizenship (2003) Women at the Centre (2011) A Fair Income (2011) and Peer Power (2012) and The Unmaking of Man (2013). Simon is also an Honorary Senior Research Fellow at the University of Birmingham's Health Service Management Centre.

Follow Simon on twitter here.

 

[Kalliope]

Thank you @Bob

I am not English, and can't quite grasp what their position is as a source for politicians/researchers/journalists etc.

I had a look at their web site earlier, but had not spotted the info on Mr. Duffy. I take it he is the one who wrote the article? (It isn't signed, as far as I can see).

 

[Bob]

I am not English, and can't quite grasp what their position is as a source for politicians/researchers/journalists etc.

Oh, I see, I've no idea what sort of relationship they have with the general media and politicians etc. As far as I'm aware, they may not have an enormous amount of influence, which is a shame, but that's probably to do with resources rather than reliability.

I had a look at their web site earlier, but had not spotted the info on Mr. Duffy. I take it he is the one who wrote the article? (It isn't signed, as far as I can see).

Actually, the author is George Faulkner, who wrote the report discussed in the other thread that i linked to above.
You can read a bit about him at the beginning of the other report. (See PDF here).

 

[Kalliope]

many thanks @Bob

 

[AndyPR]

Because it's exactly what Ellen Goudsmit did when she was on here a while ago. She was posting here, and at the same time making disparaging remarks about us (PR) on twitter. When she got called out on it she instantly blocked her twitter account so we couldn't read what she was saying about us. After a few hours she realised that nobody else could view her twitter account either, and as it was so important to her that the world had access to her tweets she had to re-open her account to all, and delete some of the tweets she'd made about us.

She still seems to hold a grudge, she posted this to the ME Association Facebook page today. (my bolding)..

Co-Cure used to be a forum for adult and intelligent discussion on ME and CFS. Recently, I submitted something to correct misleading information and it wasn't posted. If Co-Cure has been taken over by those who don't care that much about accuracy, then it's a huge loss to patients and researchers. it's become yet another site run by angry people whose emotions dictate what we should know. I don't wish to be misled and manipulated. I can't argue against the lack of attention to detail and influence of politics in the PACE trial etc if patient fora do the same thing. Phoenix Rising allowed the bullies quite a lot of space. I saw a fair amount of misinformation. so that's two patient resources where accuracy is not valued. We deserve better.

 

[sarah darwins]

I can't argue against the lack of attention to detail and influence of politics in the PACE trial etc if patient fora do the same thing.

Invites the question: why not?

She seems to think the proper function of a patient forum is to agree with her.

 

[Tom Kindlon]

Regarding Co-Cure, I just posted the following:

I have just seen an accusation regarding a message that was submitted to Co-Cure not being posted.

Just to clarify that neither Tate, Charles or I can see submitted messages (so we can not approve them). We were given the power to approve our own messages a number of years ago (I didn't want to be a moderator at that time due to my other responsibilities).

Tom

 

[Jeckylberry]

In what universe is a forum poster subject to the same rigor as a researcher? Maybe this is the problem all along: That the trial became a pet, a personal investment that HAD to work. They made it mean more than the sum of its parts and forgot the rules and structures by which a successful trial MUST conform and will be judged to be considered legit. So when it is subjective and objectively criticised, they can't stand the pain! It's comes across as bullying and terrorism because, like a Twitter tirade or a forum, it's personal and an attack on it is an attack on them. They throw themselves in the firing line and blame the shooter when they lie bleeding.

What was PACE really about? It clearly has a deeply personal quality that has everyone involved feeling pain on being subject to normal scrutiny. Something other trials do not seem to have endured to this level.

Is it that psychology is so deeply embedded here - (there was a lot of pep talk, encouragement, and such high emotive factors going on) that both patient and researcher feeling touched by it is inevitable?

 

[Esther12]

What was PACE really about? It clearly has a deeply personal quality that has everyone involved feeling pain on being subject to normal scrutiny.

Reminded me of this:

https://twitter.com/i/web/status/767341505119940608

 

[Jeckylberry]

That'd do it. He has a vested personal interest and entitlement to the outcome being all he expects. It mustn't fail - on a psychological level. It means too much. Precisely why scientific research is carefully structured, even in the use of the the passive voice ( x was accomplished) to distance emotional involvement and thereby minimise personal bias. everyone in the trial is infused with this enthusiasm and so it hurts so bad when it fails precisely because of this sandy foundation.