UK Research Collaborative Conference in Newcastle: 13th - 14th October

[user9876]

He argues that individuals are highly averse the having these kinds of strongly-held expectations disconfirmed. So they "adjust" their movements - at pre-conscious level - to ensure the movements actually do align with expectation.

I've always felt very unhappy at this type of reasoning. The thing that it is buried deep in the subconscious or at a pre-concious level but suggesting that it gets there due to experience and beliefs. Is there any evidence of mental processes taking this form.

I think there is a valid argument that it happens at a pre-concious level due to a signalling problem where the pre-concious level basically compute control signals or perform perception interpretation. The question I is is there any evidence that such processes are influenced by concious thoughts. Of course there is a control loop via hormones which prepares the body for say a flight/fight response and perhaps people can learn to control this but I've assumed this is by controlling the initiation of the response rather than the response itself (it may be more complex in that there could be a reinforcement loop which could involve consious thought). The other thing that comes to mind is people re-learning basic functions after a stroke but as I understand it that is about repeated movement patterns.

My suspicion is there is nothing in cognitive science that they can point to that would support this concious re-programming pre-concious behaviors. It would be interesting to know what there is in terms of signal flooding etc.

[Edit]
I hate the software analogy he gives somewhere. Its very naive about the way computers work where there are levels of software with processors designed so that layers can only interact in controlled ways with other layers/processes.

 

[user9876]

The thing I worry about with Edwards work is that I don't see a clear hypothesis and how that links to a set of experiments. I think I can see the experiment he is proposing to run but I don't really see what can be safely concluded. If there is additional activation in the brain around regions processing (well do we know what they process) then what does that mean in terms of cause and effect. If they correlate with immune signal patterns I can see that is interesting. But could an unambiguous statement be placed on its meaning and hence where to look for further evidence?

In comparing activation states with people fighting the live vaccination would it tell us anything if they are the same apart from the brain is perhaps processing signals from the body relating to being sick. It doesn't seem to really get at any control loop.

Would the absence of activation tell us anything?

Or am I missing the obvious?

 

[Woolie]

The one possible exception is when someone has been found to have a psychiatric disorder which is severe enough that they have legally been assigned someone to make medical choices for them. Albeit with a lot more checks and balances than the current systems seem to have, where one psychobabbler makes an accusation of hysteria and all rights suddenly evaporate

Interesting you should say that, @Valentijn, there is a view emerging that even those that are severely mentally ill or intellectually handicapped should rarely be considered to be globally incompetent to make decisions. Their competency should be assessed in relation to the current decision, task or question. Their capacity could be further enhanced with appropriate scaffolding, for example, offering them supports to minimse their disadvantage (e.g., break up the task for those who have memory problems, urge reflection in those who might be inclined to impulsivity).

The point is, we need to be moving away from a paternalistic model of medicine as much as is humanly possible. We've been so horribly wrong in the past.

 

[Sidereal]

I haven't seen any published work of his on seizures, though.

He's an author on a review paper ( http://www.ncbi.nlm.nih.gov/pubmed/22661497 ) which includes a section on psychogenic non-epileptic seizures:

Aetiological work has focused on predisposing factors and psychological models, finding high rates of personality disorder,48 anxiety and dissociation49,50

There have been early attempts to look critically at the consultation as a form of treatment using a range of methodologies (see PNES above). The use of randomised trials in this context is particularly exciting, answering basic questions such as whether to withdraw anticonvulsant medication in PNES patients?128 The results were reassuring: no adverse events, slight improvement in attack frequency and a more convincing reduction of healthcare resource utilisation.

A Cochrane review found that sending clinic letters from secondary care (often following joint review with a psychiatrist) recommending structured primary care appointments with regular review, ‘hands-on’ examination of physical complaints and the avoidance of tests or referrals reduced healthcare spending in patients with the most chronic somatisation disorders. However, the effect of this approach on patients' symptoms or functioning remains uncertain.

So a reduction in healthcare spending is the goal of "treatment". They're wholly uninterested in whether it even reduces the patient's symptoms.

 

[Woolie]

I've always felt very unhappy at this type of reasoning. The thing that it is buried deep in the subconscious or at a pre-concious level but suggesting that it gets there due to experience and beliefs. Is there any evidence of mental processes taking this form.

Well put, @user9876, never ceases to amaze me how perceptive people are on this forum! The "beliefs" Edwards is referring to are very much conscious. But they exert their effects at a "pre-conscious" level.

One better idea I read recently put the entire process at a pre-conscious level, a bit like you suggest. These guys offered a new suggestion for some kinds of "psychogenic" movement disorders. They suggested that pain may play a critical mediating role in their development. The movement difficulty develops gradually as a direct response to complex and chronic pain. The mechanisms responsible operate at a subcortical level, engendering a gradual change to movement behavior that is outside the person’s awareness.

This makes much more sense, and takes the psychology right out of the equation. Alas, this is a lone voice in a sea of psychobabble.

 

[Woolie]

So a reduction in healthcare spending is the goal of "treatment". They're wholly uninterested in whether it even reduces the patient's symptoms.

Yea, it seems that way. There's this tendency to minimse the suffering of anyone with a "psychogenic" problem. They think, it can't be all that bad, since its all in their head. Never mind that people with "psychogenic" seizures tend to have more frequent seizures on average than those with epilepsy. And no help with management. But you still see this focus on health care costs, rather than the reduction of suffering: "How can I get these people out of my clinic/office surgery?".

 

[MeSci]

Agreed. My position is that trust is earned, not automatically given. So is distrust. This particular individual has earned our distrust. If he wants our trust now, he has to earn it. That's only fair. He has a long nasty record to make up for.

One doesn't automatically trust an abuser just because s/he says s/he's changed. Similarly, I don't trust a researcher with a strong background in psychogenic theories just because the new research proposal looks superficially okay (which it doesn't entirely). Given that he has said nothing about rejecting psychogenic theories, we aren't even in the position of someone saying, "Yes, I was abusive previously, but I see the error of my ways so you can trust me now." All we have is a parallel to an abuser saying, "Just trust me!" No thank you. I will trust you if and when you prove beyond question that you have permanently changed direction. That takes time and hard work on your part.

If this research proves solid and without false psychogenic interpretations I will accept it. Good research is good research, whoever does it. However, based on this researcher's background and the fact that he has not rejected psychogenic theories, are think it's safe to go with history and assume he is going to continue in that direction until proved otherwise.

Let's not fall into the same trap that some abuse victims do. They want so very, very badly for things to be different that they get sucked in by any lie that fits their wishful thinking. "Honest, honey, I've changed! Really! I'll never hit you and the kids again." The victim ignores all the history, the lack of proof of any honest change, and clings desperately to the only thing (the lie) that suggests reality is not as rotten as it is. Let's not be that victim.

This man has the opportunity to prove himself. If he does, great. We should all value good research, whoever does it. But the proving comes before the trusting. I'm watching. Time will tell. Until then, I'm not getting my hopes up.

I'm also acutely conscious of the numerous other psychoquacks, and perhaps hapless, well-meaning clinical lackeys, who repeatedly say that they don't think that an illness is all in the patients' minds, but the treatments they promote or provide tell the opposite story. IIRC, some clinical and research protocols have, in detail and in writing, instructions on how to fool patients into thinking that practitioners and researchers do not think that their illness is in their minds, when in fact this is the basis for the 'treatments' (aka abuse).

Mark Edwards has worked with, and expressed admiration and support for, some such psychoquacks.

 

[MeSci]

If he publishes the results of his new research and does that I will put him in the weasel camp. Until then I will give him the benefit of the doubt.

As far as volunteering for one of his studies? I wouldn't.

 

[Large Donner]

Lets put it this way, would anybody here want him to explain ME to a family member or their GP having seen the kind of people he works with?

 

[Esther12]

His patients do love him, and he does seem to be one of those rare doctors who really cares about them. Some of his treatments may even be effective (I'm not sure). But I do worry about the ethics of this type of misrepresentation.

Not saying he's pure quack, but lots of pure quacks can report the same. When a patient has been coldly mistreated for a long time, some 'kindly' mistreatment can lead to some real enthusiasm.

 

[jimells]

For a number of years I had a movement disorder in the right hand pinky finger. It was permanently bent. No amount of thinking the right thoughts succeeded in straightening my finger. If I had gone to Mark Edwards, he would've sent me to his psychobabble buddies to explore the secondary gain I received when the disorder interfered with playing saxophone, using computer keyboards, and keeping my finger out of the way of hammers.

Instead I went to hand surgeon who successfully fixed my finger.

 

[jimells]

It's a pity that Martin Edwards isn't on the forums to answer questions.

Well I would certainly give him a few stars for the courage to enter the Lions' Den.

 

[Snowdrop]

Why is this mindset so deeply embedded in the UK? This might be a question worth exploring to figure out how to shake it loose.
There is some really excellent work going on the the US despite the overall climate of disbelief.
It seems to me that a part of it is there have been people in the US who have been able to tell there stories (for quite some time now) without interference. These people where never obliged to go to a Dr in a system that promotes CBT/GET the way UK does and could find Dr willing to try alternative treatments. I'm thinking of Laura Hillenbrand whose New Yorker article on ME appeared in 2003.

There don't seem to be those voices in the UK. They seem to be co-opted fed the bullshit and then willing to regurgitate it. Maybe more better media coverage would start to break this incredible hold that nonsense has in the UK. There are so many people looking for help anywhere they can and when they come upon a seemingly sympathetic DR they will be fooled into believing what they are told.

This is such a mess. And a huge moral and legal issue. I'm not fully versed on all the ongoing stuff but it seems to me that some of the changes that have happened that are positive in the US did not happen through ME advocacy groups so much as dedicated Dr's willing to really look at the patient and consider the possibility that something was indeed wrong. And media outlets that seem to have more freedom to pursue a story without having to spin it a certain way. Maybe looking at the UK and seeing how to encourage things differently might help to break the strangle hold of this most pernicious mindset--it really is tantamount to abuse. This money for research given to Mark Edwards should not have happened.

PS I haven't expressed everything I've wanted to say and what I've said could probably be said better.

 

[jimells]

Why is this mindset so deeply embedded in the UK? This might be a question worth exploring to figure out how to shake it loose.

We could hire Sir Simon the Weasel to find a psychobabble explanation, or we could hire a criminal investigator to expose how the disability insurers bribed the Weasel School to work with NHS, DWP, NIH and CDC in order to bury the illness.

As for Mark Edwards, dropping a suitcase of cash on his research is like hiring the Taliban to teach Vacation Bible School. Sure they know about Jesus, but your kid may come home missing a hand...

 

[Dolphin]

Why is this mindset so deeply embedded in the UK? This might be a question worth exploring to figure out how to shake it loose.
There is some really excellent work going on the the US despite the overall climate of disbelief.
It seems to me that a part of it is there have been people in the US who have been able to tell there stories (for quite some time now) without interference. These people where never obliged to go to a Dr in a system that promotes CBT/GET the way UK does and could find Dr willing to try alternative treatments. I'm thinking of Laura Hillenbrand whose New Yorker article on ME appeared in 2003.

There don't seem to be those voices in the UK. They seem to be co-opted fed the bullshit and then willing to regurgitate it. Maybe more better media coverage would start to break this incredible hold that nonsense has in the UK. There are so many people looking for help anywhere they can and when they come upon a seemingly sympathetic DR they will be fooled into believing what they are told.

This is such a mess. And a huge moral and legal issue. I'm not fully versed on all the ongoing stuff but it seems to me that some of the changes that have happened that are positive in the US did not happen through ME advocacy groups so much as dedicated Dr's willing to really look at the patient and consider the possibility that something was indeed wrong. And media outlets that seem to have more freedom to pursue a story without having to spin it a certain way. Maybe looking at the UK and seeing how to encourage things differently might help to break the strangle hold of this most pernicious mindset--it really is tantamount to abuse. This money for research given to Mark Edwards should not have happened.

PS I haven't expressed everything I've wanted to say and what I've said could probably be said better.

One tentative conclusion I have/one possibility I wonder about is that a free health care system may cause problems. Doctors don't see patients as customers and so don't go the extra mile to be nice to the patient to hold on to them.

In Ireland, we have a mixed public and private system. I don't think there are as many horror stories as there are in the UK; I think GPs know they have to be nice to their private patients to hold on to them and this may prevent them getting into bad habits.

Another problem in the UK is people entrenched the GET and CBT approach by looking for services and NICE guidelines when it was unlikely that other therapies would be seen as evidence-based. So there are now hundreds of people employed as part of the CBT/GET system, some of whom will go on to publish research promoting it and other psychology-based/patient-blaming theories.

 

[SOC]

Would like to hear people's views on this misrepresentation thing. Even if these disorders are "psychological" (and I very much doubt they are, not in the way Edwards thinks), and even if your objective is to try not to scare people off so you can help them, is it okay to lie about your true beliefs?

No. Absolutely not!

Even if psychosomatic disorders are ever proven to exist, the doctor does not have the right to take away the informed self-determination of the patient and replace it with what the doctor thinks is best.

Exactly.

In all these cases, it's the doctor's opinion that the patient is incapable making his or her own decisions about treatment. No in-depth analysis is involved, no team has given a written documentation outlining the medical necessity of removing the patient's freedom of choice, no court action is involved. ONE single doctor gets to make that decision without any written documentation or accountability. Lieing to patients about the foundations of the treatment you are giving them is wrong on so many levels, I'm surprised there's not a huge uproar about this practice. Paternalism at its worst.

 

[SOC]

Why is this mindset so deeply embedded in the UK? This might be a question worth exploring to figure out how to shake it loose.

Is there a cultural bias towards accepting paternalism or the superiority of some groups without regard to merit? There's still a royalty and an accepted aristocracy-by-birthright in the UK -- something most first world countries have rejected.

Something that really bugs me about this whole BPS nonsense and the lies that go with it is the thinking that goes something like this -- "I personally am unable to understand this. Since I am infinitely wise and intelligent, if I don't understand it, it cannot exist." There seems to be no acceptance of the fact that intelligent patients and clinicians could understand something they don't. There's no acceptance of solid research from other brilliant researchers, especially if the researchers are from another country. They seem to consider themselves so superior to everyone else that there is no possibility that something they can't figure out can actually exist. It's like they think they are gods -- omniscient, omnipotent, and unquestionable.

 

[Snowdrop]

One tentative conclusion I have/one possibility I wonder about is that a free health care system may cause problems. Doctors don't see patients as customers and so don't go the extra mile to be nice to the patient to hold on to them.

In Ireland, we have a mixed public and private system. I don't think there are as many horror stories as there are in the UK; I think GPs know they have to be nice to their private patients to hold on to them and this may prevent them getting into bad habits.

Another problem in the UK is people entrenched the GET and CBT approach by looking for services and NICE guidelines when it was unlikely that other therapies would be seen as evidence-based. So there are now hundreds of people employed as part of the CBT/GET system, some of whom will go on to publish research promoting it and other psychology-based/patient-blaming theories.

<sigh> Coming from Canada I agree and understand the social medicine analysis. We've not had a direct conversation but I believe my Dr does not believe in ME simply because if he did it would make no difference to what he is able to do for me. He is willing to treat my symptoms. But he will not go outside the proscribed methods that are the system here. And I think also that Dr's get rated on how their patients fair (represented by bloodwork numbers remaining stable or improving and such through his management) and my Dr likes to get a good rating.

But I can't help think it's more than that. Jimells is likely correct about psychiatry being owned by the insurance industry. Now that is a big target to bring down.

We need a hero. And a whistleblower.

Where have all the good men gone
And where are all the Gods?
Where's the street-wise Hercules
To fight the rising odds?

Isn't there a white knight upon a fiery steed?
Late at night I toss and I turn
And I dream of what I need

I need a hero, I'm holding out for a hero
'Til the end of the night
He's gotta be strong
And he's gotta be fast
And he's gotta be fresh from the fight

I need a hero, I'm holding out for a hero
'Til the morning light
He's gotta be sure
And it's gotta be soon
And he's gotta be larger than life

from Bonnie Tyler song lyrics Jim Steinman Dean Pitchford

And he doesn't have to be a he.

 

[Snowdrop]

No. Absolutely not!

Exactly.

In all these cases, it's the doctor's opinion that the patient is incapable making his or her own decisions about treatment. No in-depth analysis is involved, no team has given a written documentation outlining the medical necessity of removing the patient's freedome of choice, no court action is involved. ONE single doctor gets to make that decision without any written documentation or accountability. Lieing to patients about the foundations of the treatment you are giving them is wrong on so many levels, I'm surprised there's not a huge uproar about this practice. Paternalism at its worst.

It's like having some guys in white coats pull some random person off the street to take them away to the asylum. When the person protests it's an obvious sign that they are indeed deranged. <Many eyeball rolls out loud>

 

[Snowdrop]

Is there a cultural bias towards accepting paternalism or the superiority of some groups without regard to merit? There's still a royalty and an accepted aristocracy-by-birthright in the UK -- something most first world countries have rejected.

Something that really bugs me about this whole BPS nonsense and the lies that go with it is the thinking that goes something like this -- "I personally am unable to understand this. Since I am infinitely wise and intelligent, if I don't understand it, it cannot exist." There seems to be no acceptance of the fact that intelligent patients and clinicians could understand something they don't. There's no acceptance of solid research from other brilliant researchers, especially if the researchers are from another country. They seem to consider themselves so superior to everyone else that there is no possibility that something they can't figure out can actually exist. It's like they think they are gods -- omniscient, omnipotent, and unquestionable.

Really good questions. Also, on the surface it looks like the wealth of the one percent in the UK is much more conservative in terms of philanthropy. Although I could be wrong. But there seems to be more money flowing from American wealth into the hands of researchers. Again I could be wrong.