David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

Attachments

Peter Trewhitt said:
It seems to be part of Government policy/practice when commenting on any issue to try to convey that the Government fully understands the issues and constructive action is being undertaken. [added - To do that in these circumstances they obviously were scraping the bottom of the barrel.]

Presumably whoever briefed Brine or wrote his statement has not grasped that this training material exemplifies the very problems that the motion being debated was raising. So either that person (or those persons) has been completely taken in by the BPS propaganda or is a fully paid up member of the BPS cult.
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Maybe. But there are other explanations too. As the material proves rather embarrassing it could be a covert attempt to undermine as the material is in fact relevant to a briefing. Or coming from a busy bureaucrat it could be that knowing nothing of the topic they simply researched what was needed without actually reading anything. So if it was requested to find whether their was material available for GP education they simply looked around for said material, found it, and included it and moved on.

Either way, they certainly did us a favour. And now the site is have 'issues'.

ETA: I see you had a further post on the subject with other possibilities.
 
ladycatlover said:
It came from the HoC Library.

Number CDP 2019/0014, 22 January 2019

By Dr Sarah Barber
Dr Rachael Harker
Nikki Sutherland

At least that's what I'm assuming - think it was given to anyone in HoC who asked for it?
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Thank you @ladycatlover, I had not read the briefing though I was aware of it. So it seems this was the main basis of Brine's statement, over and above him having seen Unrest.
 
Peter Trewhitt said:
Thank you @ladycatlover, I had not read the briefing though I was aware of it. So it seems this was the main basis of Brine's statement, over and above him having seen Unrest.
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The briefing was mentioned in another thread here - I must apologise to whoever posted it for not acknowledging their very useful input. Brainfog and shutting down browser completely my poor excuse. But the PDF of the briefing remained as not in web browser but just an open file. I think I'd better save it to hard drive!
 
Daisy said:
Thanks @Peter Trewhitt . I wondered if I'd missed something obvious, as surely whoever wrote the briefing must have anticipated that the training material would be subject to increased scrutiny.
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It may be because they didn't realise this training could (currently) be accessed free by any member of the public. I originally subscribed to the RCGP site to try to access their GP training on autism, because the autistic self-advocacy community are aware of the problems of many such 'basic' courses being full of stereotyping, over-simplification of complex issues and potentially harmful advice etc.. However, I just can't bring myself to cough up the £55 I'd have to pay to access the autism training e-course, knowing that it will probably induce stress, anger and other negative emotions.
 
Ministers have briefing provided by the civil servants in their departments using a range of sources. Also it is highly likely that the “training” would have been mentioned by RCGPs chief as part of the discussion she had with Brine in the run up to the debate. No doubt along the lines of “We know training we’ve got the best training”. Pity he didn’t ask her why ME people aren’t getting taken seriously by GPs.

The HoC library stuff is more for backbench MPs who don’t have the resources of government departments to draw on for information.
 
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NelliePledge said:
Ministers have briefing provided by the civil servants in their departments using a range of sources. Also it is highly likely that the “training” would have been mentioned by RCGPs chief as part of the discussion she had with Brine in the run up to the debate. No doubt along the lines of “We know training we’ve got the best training”. Pity he didn’t ask her why ME people aren’t getting taken seriously by GPs.

The HoC library stuff is more for backbench MPs who don’t have the resources of government departments to draw on for information.
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That's the problem with flawed assumptions, it makes good judgment impossible, even in well-meaning people. Anyone looking at the material before being satisfied that it is worth touting would not know that it is bad and never think it may be problematic. The same thing could have happened with training material that describes the psychosomatic model of peptic ulcers before H. Pylori was shown to be the cause.

And anyway it takes some digging and prior knowledge to make the connection to the course being based on FINE and being aware that FINE showed no useful treatment effect (despite playing on easy mode and using cheat codes). Science works because it is self-correcting. When the most basic ability to self-correct is broken, this is what happens. It's always disastrous and will not improve until flawed assumptions are taken out behind the shed and double-tapped for good measure.

There's probably some analogue to Dunning-Kruger where instead of skill, it's flawed assumptions that make it impossible to find error in judgment. Same outcome, just a different path to failure.
 
rvallee said:
Dunning-Kruger
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Wikipedia
The psychological phenomenon of illusory superiority was identified as a form of cognitive bias in Kruger and Dunning's 1999 study, "Unskilled and Unaware of It: How Difficulties in Recognizing One's Own Incompetence Lead to Inflated Self-Assessments".[1] The identification derived from the cognitive bias evident in the criminal case of McArthur Wheeler, who robbed banks while his face was covered with lemon juice, which he believed would make it invisible to the surveillance cameras. This belief was based on his misunderstanding of the chemical properties of lemon juice as an invisible ink.
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:)
 
dave30th said:
Brine needs to be put on the spot about this. Assuming he agrees it is not an acceptable approach, he will have to explain why a training program from the organization that endorses it should be praised for addressing "misconceptions" about the illness.
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Hopefully he didn't mean it addresses the misconceptions of the 27 other MPs who spoke. Surely he didn't mean that. He couldn't.

strategist said:
because we're very close to the UK government waking up and realizing that it has been manipulated and lied to by dishonest researchers.
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I suspect the UK government got exactly what they ordered. They may now be examining ways to plausibly deny it and look shocked and horrified. That will probably have to involve throwing certain people under a bus. Or appearing to throw a few people under a bus.
rvallee said:
That could certainly explain some of White's friend's histrionics. It's a pretty big hole they have dug themselves into and there is no coming out of it without accepting responsibility, blame and consequences.
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Ahem. Bus. Ahem.
DokaGirl said:
A damned if you do, and damned if you don't choice.

You can choose to refuse potentially harmful GET, and be denied disability benefits, or choose to do GET and risk further worsening of your ME.
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Perhaps @dave30th's series of blog posts should be re-named Trial by Ordeal.

https://en.wikipedia.org/wiki/Trial_by_ordeal
Daisy said:
Thanks @Peter Trewhitt . I wondered if I'd missed something obvious, as surely whoever wrote the briefing must have anticipated that the training material would be subject to increased scrutiny.
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Past form has shown that the BPS crew really are capable of shooting themselves in the foot like that.
 
strategist said:
I just realized that the PACE authors are now probably living in fear of real consequences, because we're very close to the UK government waking up and realizing that it has been manipulated and lied to by dishonest researchers.
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That seems a very optimistic view.

There were 27 MP's speaking on behalf of their constituents in the debate.

The motion was passed by the 40 or so present but that puts no legal obligation on the government to do more than record it in Hansard. They have no obligation to take any notice of it at all.

There are 650 MP's altogether, most of whom are only slightly aware of the topic and not interested.

Almost all of our MP's have no understanding of how science works. There are very few scientists in Parliament.

When the government is making policy on an issue that involves them taking scientific advice, they decide the policy first, then look for some tame scientists who can provide 'evidence' to support that policy. They call this evidence based policy.

In the case of ME and benefits they employed doctors who decided it would serve their masters to believe the biopsychosocial mumbo jumbo proved that work it the best cure for everything and giving sick people benefits is bad for their health.

It suits the government (on both sides of the political divide) to turn a blind eye to any science that is going to lead to increased costs in the short term. (they don't think past the next election).
 
DokaGirl said:
@Snowflake

Thank you.

Despite laws to protect many from being forced into treatments they do not want, pwME must often choose between GET and disability coverage, or refuse GET, and possibly jeopardize disability assistance. The laws don't seem to protect this particular UK community. I understand Australia is the same.
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I think you are correct, there do not appear to be any UK laws that protect patients from having their benefits removed if they refuse treatments. However, according to an article in The Telegraph (see link below) in 2014 there were rules to protect patients:

Existing welfare rules mean it is not possible to require claimants to have treatment, such as therapy or counselling, as a condition of receiving sickness benefits.
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I have yet to establish whether the above rule is still in place. However, the focus of this Telegraph article is about “moves towards potential reform” (of this rule) “in order to reduce the “huge” numbers of people who are declared unfit for work due to mental health problems”. The article then describes how the government was launching some pilot trials to “test ways of combining treatment for mental health problems with support to find work”. These pilot trials went ahead in job centres across the UK.

I don’t know the outcome of these trials or whether these “potential reforms” ever occurred or if they are still in discussion. It would be great if someone could shed some light on this if anyone knows!

Some other interesting perspectives from the article:

A senior government source said “a huge number” of claimants on ESA who cannot work have treatable mental health issues such as “depression and anxiety”.

“We know that depression and anxiety are treatable conditions. Cognitive behavioural therapies work and they get people stable again
but you can’t mandate people to take that treatment,” the source said.

“But there are loads of people who claim ESA who undergo no treatment whatsoever. It is bizarre. This is a real problem because we want people to get better.

“These are areas we need to explore. The taxpayer has committed a lot of money but the idea was never to sustain them for years and years on benefit. We think it’s time for a rethink.

“At some point something has to be done. Right now it’s an open ended contract.”
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My bolding.

https://www.telegraph.co.uk/news/po...ants-who-refuse-treatment-for-depression.html


 
Esther12 said:
Are they now trying to present DWP driven rehabilitation as something that is distinct from medical 'treatment' that require informed and freely given consent?
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Presumably in theory a medical opinion that the so called rehabilitation was a risk to your health would prevent DWP from enforcing it but you would need to find a doctor able and willing to give such an opinion against DWP. And presumably DWP could chose to challenge it and would it not then end up in court like private medical insurance cases. But how would the claimant fund their legal case?

I Daniel Blake springs to mind.

ETA so the least worst approach might be participating but complying as little as possible to see if you can get through it without financial sanctions and significant health worsening
 
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Barry said:
And indeed, when should enforced rehabilitation be undertaken without medical oversight? Is it even legal?
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That's what I've been trying to get across to AfME with respect to distributing their Toolkit to DWP job coaches. Rehabilitation is a form of medical treatment and should only be attempted on expert medical advice, especially with something like ME.
 
I see it as them trying to sit on both sides of the fence -

On one side they want CBT to be given the gravitas of rigorously trialled medical treatments. In which case there should be detailed evidence of safety and efficacy.

On the other it's not a medical intervention. It's just a talking therapy and can't, in any shape or form, do any harm. Which also undermines the arguments of efficacy and means there's not justification for the health service or anyone else spending money in it.
 
DokaGirl said:
Despite laws to protect many from being forced into treatments they do not want, pwME must often choose between GET and disability coverage, or refuse GET, and possibly jeopardize disability assistance. The laws don't seem to protect this particular UK community. I understand Australia is the same.
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Snowflake said:
I think you are correct, there do not appear to be any UK laws that protect patients from having their benefits removed if they refuse treatments.
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On second thoughts perhaps the laws which give patients the right to refuse treatments should protect them from having their benefits cut if they refuse treatments. In which case the DWP would be breaking the law if it was cutting benefits for this reason. I guess it would really depend on how this law is interpreted. Is there anyone with a legal background who would like to weigh in on this? It would be jolly helpful to clarify whether or not the DWP are operating outside of the law on this matter!
 
We made some enquiries last year via our MP Ed Davey after questions were raised in a local ME support group. This is the answer he received.

ETA: struggling to get this to open. Will try to find another way of posting the response.

ETA2: cannot get whole link across but substance is below, and in view of relevance to the discussion have just posted this. Apologies for the delay.

‘6th June 2018

Dear Ed,

Thank you for your email of 16th May..........


I appreciate your constituents’ concerns and can advise them that neither our Assessment Providers nor Departmental decision makers use GET to assess claimants with ME/CFS when determining benefit entitlements.

.............

From Rt Hon Esther McVeigh’
 
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