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

A.B.

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Will there be a Phoenix Rising article, or summary of this conference (of the biomedical stuff, I don't care about the babble) ? I found the stream impossible to follow due to sound qualities.
 

user9876

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Sorry to drag things back to yesterday's Mark Edwards presentation on a new MRC-funded project. There was some interesting stuff today (more on Collin study later)


He doesn't like Freudian explanations/hysteria, or reattribution (interpreting emotional problems as physical symptoms, if I understand right) - but he is big on abnormal illness beliefs, the result, in his view, of flawed learnig styles. Who knows, maybe he's right - some of the slides were interesting, and as you say were hard to interpret without the background. But the conclusion seemed pretty unambiguous:
If he is claiming it is learning styles then he needs to show that many people with a learning style have such problem. If he is post testing (ie after people are ill) then learning styles may reflect ways of dealing with cognitive issues.
 

Sasha

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Will there be a Phoenix Rising article, or summary of this conference (of the biomedical stuff, I don't care about the babble) ? I found the stream impossible to follow due to sound qualities.
Unless @Mark went, I don't think so. I think there would need to have been someone in attendance and taking notes in order to be able to produce an article, because the sound quality was so extremely poor and we couldn't see any slides.

AfME have already said that they'll produce an article.
 

Large Donner

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Actually, the majority of people working in psychiatry research today are trying to find biological mechanisms and biological treatments for psych diseases. This psychobabble stuff is a minority sport these days, used mostly in contexts where medicine has no answers and has to come up with fake answers to try and save face.
Then by that very explanation they would not be doing psychiatry they would be doing neurology. So whats the point of psychiatrists especially the ones who charge hundreds of pounds an hour to "treat people" with nothing more than a couple of armchairs and a posh room then dole out psychotropic meds.

There's definitely no shortage of them. But thats ok isnt it because their psych buddies in research have done all the ground work haven't they and the research is concrete so they don't really even have to read it, they can just follow a directive.

There is definitely no shortage of CBT proponets around the place and sadly many of them are referring neurologists or GPs etc who have been persuaded by psychiatry of the nonsense they subscribe to.

Sadly like this Edwards guy much of the so called "psychiatric research to find biological mechanisms and biological treatments for psych diseases" is purely to continue the notion that there is such a thing as a psych disease which is a contradiction of terms.

Its ironic that much of neurology seems to be moving backwards if psychiatry is moving forwards as you claim. Or perhaps they are just both moving towards "there is no distinction between psychiatry and neurology" and those who try to distinguish between "mental illness and physical illness" are being unhlepful" as a meme to both be as lazy as each other and save face.

Just look at the fact that 600k plus has been awarded to "functional neurological disorders" for a supposed biomedical ME project and tell me again that psychiatry has moved in the right direction.

When neurology is at threat of being taken over by psychiatry that is too worrying. All that can be produced is "biomedical" answers for claimed psychiatric issues that can be dealt with by CBT etc or the latest big earner psychotropic drug.

Those failing the CBT class will be claimed to be too deeply rooted and to far down their false illness belief to be helped.

Five million US school kids attending school under the influence of psychotropic drugs by order of the state with the parents at risk of being accused of medical neglect if they don't administer the drugs to their kids is not a sign that psychobable is dead on its feet.

The DSM pushing for more and more spurious categories and mixed categorizes of conversion disorders regardless of the fact that someone already has a physical illness diagnosis is not a sign that psychobabble is dead on its feet. Its a sign of growing the brand of "functional disorders".

After all, psychotropic drugs are due to "biomedical" research, right??
 

user9876

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Poor sound quality but a huge wake up call by George Davey Smith for much bigger, sharper studies. Holgate now
Picking up on the theme, saying we need to collaborate and pool resources and more funds
Is there a contradiction between the 'sharper studies' and the large pooled collaborative 'collect everything' study that Holgate seems to be pushing?
 
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I only jotted down a few notes from Mark Edwards talk yesterday near the beginning.
I thought he said that his research was in collaboration with others, including Neil Harrison (Sussex) and that they were looking at the mechanisms in the brain that could be going wrong in PEM.
To elicit "sickness behavior" in healthy people, they gave typhoid vaccine (live). Scans showed that this caused an activation of the insula in the brain. Also the degree of insula activation was proportional to the level of "sickness" symptoms. Sorry I didn't hear/note the type of scanning used.
My understanding is that they will now look for possible similarities in PWME.
Neil Harrison spoke at IiME in May. He's newish to ME, but seemed very biomedically/neurologically based.

I only briefly looked at the "Pink Elephant" slides briefly as the psycho/socio ... does my head in, and I'm not trying to defend him.
I just think we should maybe understand a bit more about the project, before he gets chucked out with the bathwater.
Or I might just have misheard him. His talk was before some kind person said there was a volume control on the live stream.
I realise that, like Oystein Fluge, I should have been at both meetings at once - but I had to visit my mum in Canterbury today. Oystein will probably have been bringing the CMRC people up to date on what Carmen Scheibenbogen presented in May at IiME on their shared study (we have a thread on this I think - recently published).

I could not work out exactly what Mark Edwards was proposing and I am still not entirely sure but having seen your post MEMum I have been checking PubMed and I think I understand. He has published with Neil Harrison on his movement disorder patients. It looks to me as if this new project actually IS on ME and will be closer to the work Neil has published on the effects of typhoid vaccine on thinking - which is essentially a model for brain fog and sensitivity to adverse stimuli with systemic inflammatory signals.

Neil Harrison was with us at the London EMERG meeting, together with David Brooks. I initially wondered if Mark Edwards was linked in to Brooks who is interested in repeating the Japanese PET study on microglia, but it seems he is linked in to Harrison. I think in general terms these people are doing just the sort of work we need. Harrison and Brooks are two of the brightest people taking interest in ME and are both totally committed to a biomedical mechanistic approach. You are not allowed in the door by IiME if not and we all kept half forgetting that Neil is actually a psychiatrist.

I remain a bit sceptical about the stuff about prediction and Bayesian models that Edwards has written about before but I suspect it does not impact too much on the present project's value. The impression I get is that the researchers are taking the view that somehow the sorts of signals that occur in infection and make us feel lousy and unable to think go on interfering with brain function and resurface big time in PEM in ME/CFS. The idea is to try to image that happening so that it can be studied objectively. This may not be so new - it is similar to the idea behind the Japanese study and all the stuff on microglia - but I think it has to be a good place to look.

What bothers me specifically about the business about false 'beliefs' and prediction that draws on the 'predictive coding' sort of idea is that it ought to give the opposite effect. The idea is that everything we perceive is a difference or discordance between internal prediction and input. So when we move our head our brain predicts that the world will spin round and if the images on our retinae do spin round then we see it as staying still, as it really does. On this basis if someone with ME perceives input as horrible when in fact everything is fine then it ought to mean that their brain has predicted too optimistically. The false belief would be that I am superman and can leap over a truck and hardly notice the stings of a swarm of bees. And so when I feel a slight tickle I think it must be a bayonet running through my insides. If the false belief was that I was terribly ill (which seems the psychotherapists idea) then even if I was ill I would feel fine.

Maybe I have got this wrong, but I think there is a rabbit loose.
 

Aurator

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If the false belief was that I was terribly ill (which seems the psychotherapists idea) then even if I was ill I would feel fine.
Can't they easily dodge this one by claiming that if PWME really were physically ill they would indeed feel ill, but genuinely rather than spuriously as at present?
 
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If he is claiming it is learning styles then he needs to show that many people with a learning style have such problem. If he is post testing (ie after people are ill) then learning styles may reflect ways of dealing with cognitive issues.
Yes, I think being ill could well have a major effect on learning style. A series of controls with other illnesses might help - I am not sure if this was done.
 
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Can't they easily dodge this one by claiming that if PWME really were physically ill they would indeed feel ill, but genuinely rather than spuriously as at present?
Not if the predictive coding model works by discordance, as far as I can see. There would be no discordance to feel bad.
 

Large Donner

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Dr Edwards I had previously asked you on another thread to explain why you didn't agree with the IOM decision that the Oxford criteria should be retired. You promised to get back to me but I believe you must have been quite busy so I never really got a full explanation to why you think its still credible to use the oxford definition.

Perhaps now would be a good time to put it into context in light of the fact that the MRC has awarded 600k to Mark Edwards to study "functional neurological disorders". Would it be okay for him to use the oxford criteria in this study just as it appears it was in the PACE study? Who is likely to stop him using it? Will you publically condemn him if he proposes to use it or after the study is published it appears he has used it.

Johnathon Edwards Quote:
It looks to me as if this new project actually IS on ME and will be closer to the work Neil has published on the effects of typhoid vaccine on thinking - which is essentially a model for brain fog and sensitivity to adverse stimuli with systemic inflammatory signals...........

........The impression I get is that the researchers are taking the view that somehow the sorts of signals that occur in infection and make us feel lousy and unable to think go on interfering with brain function and resurface big time in PEM in ME/CFS.
Can you explain how this differs from the Wessely school stress loop learned behaviour theory, especially as Mark Edwards has no shortage of literature (most of which has been linked in this thread) talking about how he promotes false illness beliefs theory and he talks of the work of Johnathon Stone and how he appears to be some kind of mentor to him or at least his approach.

Johnathon Stones "publications" are an appalling rambling of medieval psychobabble rambling.
 

Scarecrow

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The impression I get is that the researchers are taking the view that somehow the sorts of signals that occur in infection and make us feel lousy and unable to think go on interfering with brain function and resurface big time in PEM in ME/CFS. The idea is to try to image that happening so that it can be studied objectively. This may not be so new - it is similar to the idea behind the Japanese study and all the stuff on microglia - but I think it has to be a good place to look.
I was pretty comfortable with Marks Edwards' presentation at the conference, if not bowled over, but when I got back and logged onto PR I was perplexed why everyone was up in arms. Quite apart from his back catalogue, it seems to be down to the announcement that AfME made on Facebook. The quotation in the middle came from the conference presentation but AfME slipped in the sections I have bolded. Treatment interventions weren't mentioned at the conference. He seems to favour CBT for functional neurological symptoms.

Dr Mark Edwards has confirmed that the Medical Research Council has made a £600,000 contribution to the overall cost of his study to seek a unified mechanism for functional neurological symptoms.

Speaking at the UK CFS/M.E. Research Collaborative conference in Newcastle this afternoon, Dr Edwards, who is an Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, explained how he wants to test a new theory for how functional symptoms can arise from the brain.

He says: “We believe that fatigue in CFS may occur because of abnormal activation of a network of structures in the brain that are usually involved in signalling the presence of infection and inflammation in the body. These give rise to a common set of symptoms experienced by everyone (and indeed across species) when infection or inflammation occur (known as the "sickness response").

“This sickness response is usually short-lived, but we believe that the system could be abnormally activated in people with CFS in the absence of any ongoing infection or inflammation in the body.

Dr Edwards will test if particular aspects of brain function become more normal when people with functional symptoms go through successful treatment. He says: “This would be a key step in proving or disproving our theory for how functional symptoms can be produced by the brain, and will help with future treatment development.”
 

Sidereal

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Just look at the fact that 600k plus has been awarded to "functional neurological disorders" for a supposed biomedical ME project and tell me again that psychiatry has moved in the right direction.
The guy awarded this grant is a neurologist, not a psychiatrist.

When I said that people were trying, for the most part, to find biological mechanisms of disease I was speaking about research (academic) psychiatry. Functional/psychosomatic medicine is obviously a different story, it's essentially the ghetto of medicine where psychobabble and magical thinking is rife.

I'm sorry if you've been traumatised by quackery but that doesn't make all psychiatry evil. Yes, CBT and all sorts of bullshit is used daily in clinics all over the world. There are no better treatments at present. You are conflating what happens in the clinic with what's happening with people trying to come up with better explanations and treatments. It's not for the lack of trying or malice or conspiracy or wanting to "drug children" or whatever. Billions upon billions have been spent on biomedical research to try and figure out what causes these brain diseases but not much progress has been made because the human brain may not be smart enough to figure itself out. These problems are actually excruciatingly difficult.
 

Esther12

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Putting aside problems with psychiatry/cbt/cfs/etc, isn't it a bit pointless to compare brain scans from people when they've been ill to when they've recovered while we have such a poor understanding of the cause of their ill health, as there are likely to be many changes in the way their brain functions in such different situations that we won't know if any led to recovery, or if they're all a result of recovery.

It seems really likely that they'll find that those who feel recovered have less activity related to stress/tension/attentiveness to symptoms/'gating'/etc, and that this will then be used to further justify manipulating patients in order to reduce their stress/tension/attentiveness to symptoms/'gating'/etc.

I realise I'm just going off a v brief summary of the study design and don't really know what I'm talking about (I'd planned not to comment on any of this stuff until I knew more - whoops), but if there's any truth to the idea that the plan is to compare bran scans of people who report improving/recovering with others, then this seems like a really crap idea. Also - this group may have different problems to those who don't recover, etc, etc.
 

Scarecrow

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(I realise I'm just going off a v brief summary of the study design and don't really know what I'm talking about, but if there's any truth to the idea that the plan is to compare bran scans of people who report improving/recovering with others, then this seems like a really crap idea. Also - this group may have different problems to those who don't recover, etc, etc).
There was no mention of 'recovery' at the conference yesterday. The title of the presentation was 'Imaging the correlates of Post-Exertional Malaise' and the basic idea was do scans and take bloods before and after individually tailored exercise. It sounded very much like a 2-day affair.
 

Esther12

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There was no mention of 'recovery' at the conference yesterday. The title of the presentation was 'Imaging the correlates of Post-Exertional Malaise' and the basic idea was do scans and take bloods before and after individually tailored exercise. It sounded very much like a 2-day affair.
Maybe wires have got crossed then.

I do remember some talk of prioritising research to find out why some people recovered a while back.
 

Scarecrow

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Maybe wires have got crossed then.
Because AfME are reporting it in a rather different way.
I do remember some talk of prioritising research to find out why some people recovered a while back.
I hadn't heard that. Perhaps a report from the IiME conference?

What we really, really need is a proper summary of the study design.