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

Dolphin

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The first questioner after the Mark Edwards' talk refers to this paper:

Biophys Chem. 2015 Jul;202:21-31. doi: 10.1016/j.bpc.2015.03.009. Epub 2015 Apr 4.
In silico analysis of exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome.
Lengert N1, Drossel B2.
Author information

Abstract
Post-exertional malaise is commonly observed in patients with myalgic encephalomyelitis/chronic fatigue syndrome, but its mechanism is not yet well understood. A reduced capacity for mitochondrial ATP synthesis is associated with the pathogenesis of CFS and is suspected to be a major contribution to exercise intolerance in CFS patients. To demonstrate the connection between a reduced mitochondrial capacity and exercise intolerance, we present a model which simulates metabolite dynamics in skeletal muscles during exercise and recovery. CFS simulations exhibit critically low levels of ATP, where an increased rate of cell death would be expected. To stabilize the energy supply at low ATP concentrations the total adenine nucleotide pool is reduced substantially causing a prolonged recovery time even without consideration of other factors, such as immunological dysregulations and oxidative stress. Repeated exercises worsen this situation considerably. Furthermore, CFS simulations exhibited an increased acidosis and lactate accumulation consistent with experimental observations.

Copyright © 2015 Elsevier B.V. All rights reserved.

KEYWORDS:
ATP synthesis; Chronic fatigue syndrome; Exercise intolerance; Exercise recovery; Myalgic encephalomyelitis; Post-exertional malaise

PMID:

25899994

[PubMed - in process]
 

Large Donner

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I think I explained why I thought the Oxford criteria were legitimate at the time. It is legitimate to use whatever set of criteria fit the clinical, physiological or pathological problem you are trying to address. We had an excellent epidemiologist at the meeting yesterday who emphasised that getting worked up about criteria is a waste of time. The important thing is to have some criteria, stick to them and document as well as you can and to use criteria that are relevant to the particular question you are asking. Now I quite agree that the Oxford criteria may be entirely inappropriate for lots of things they have been used for. However, when it comes to PACE there is no problem if the objective was to study the benefits of treatments in such a broad group.

In short I do not think choice of criteria has much to do with quality of science.

I don't know whether my interpretation of Edwards's aims differs from a Wessleyan stress loop - I am not sure what that is. But it would not bear any relation to childhood trauma or likely benefit of CBT. CBT wouldn't help you forget how to walk for instance.
Thankyou for addressing my question. However you still haven't answered this part from the post you quoted......

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.
Perhaps now is the time to address it with the MRC if you think it would be inappropriate for him to use the Oxford criteria or anything resembling it.

After all with a term as broad as "functional neurological disorders" surely the cohort matters and the MRC should be taking a position on it seeing as they are spending 600K of mine and other peoples tax pounds to give us a better understanding of the biomedical issues in neurological ME the term coded at G93.3 in the ICD by the WHO.
 
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Still on the subject of Mark Edwards's contribution, I'm struggling to see in the passage taken below from his 2012 paper anything fundamentally different from what could be termed a psychogenic theory (I've bolded the salient bit). Am I missing a crucial difference that makes Edwards's theory emphatically not a psychogenic one?
If we take a biomedical viewpoint then 'psychogenic' does not really mean anything. The problem with the people who talk 'biopsychosocial' is that they never really say what they mean. The bit you quote looks entirely biological to me and mostly does say what it means. I think the difficulty lies in the use of the word belief, which is ambiguous.

It is all difficult to tease out but I think if psychogenic means anything it means that some conscious thought process at the sort of level that we normally regard as modifiable by social interaction feeds in to production of symptoms we normally think of as arising from the body. Edwards is definitely not suggesting that. He is putting the error mechanism at a much lower brain level. Many patients may feel that their illness is not generated by an error in the brain at all - and I would agree that is highly likely. However, I think it is entirely consistent with a biological approach to suggest that some cases are. I think maybe Edwards's chief mistake is to try to find a single all encompassing model.
 
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Mark Edwards used the term "interoceptive processes". Peter White loves to go on about interoception and that patients misinterpret normal physical sensations due to abnormal interoception.
I would have thought that interoception was highly likely to be deranged in ME - all sorts of plausible mechanisms could fall under that, including mediation by autoantibodies since the immune response is essentially interoception. You suggest that White says patients 'misinterpret normal physical sensations' and of course that would not be what happens with abnormal interoception because they would get abnormal sensations. My suspicion here is that interoception is a good thing to consider and the fact that White has picked it up and got the wrong end of the stick is by the by!!
 

Cheshire

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I think maybe Edwards's chief mistake is to try to find a single all encompassing model.
Yes, that's what is mainly worrying. Most of the research seems to show that there might be different disease processes within the group of patients diagnosed with ME. And M. Edward is trying to find an underlying mechanism that would explain all "functional" disorders. All that those so called functional disorders have in common is that they have no known biological cause, that's a "non category".
 

Dolphin

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Here's a sample of what Peter White says on interoception:

Patients with chronic fatigue syndrome perceive activity as more of an effort than healthy controls and underestimate their cognitive and physical abilities, while being more aware of their internal physiological state, a phenomenon called interoception.1,3,9,10w2 w15 w20-22 How might this be related to being sedentary or having a disabling illness in childhood? Inactivity increases perception of effort with exercise, through both physiological deconditioning and the related cognitive, emotional, and sleep disturbance from being sedentary.11w23 w24 This may enhance or sensitise interoception, perhaps in a similar way to that hypothesised in the related disorder of fibromyalgia.w25 The corollary is that this enhanced bodily awareness or interoception may itself cause sedentary behaviour. When an appropriate trigger supervenes in later life, enhanced interoception may predispose some people to chronic fatigue syndrome.5 Trials of prevention are required to test this idea.11w26 Treatments that “reprogramme” interoception and increased activity, such as graded exercise therapy and cognitive behaviour therapy, seem to help most patients.12
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC524091/
 

Large Donner

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Yes, that's what is mainly worrying. Most of the research seems to show that there might be different disease processes within the group of patients diagnosed with ME. And M. Edward is trying to find an underlying mechanism that would explain all "functional" disorders. All that those so called functional disorders have in common is that they have no known biological cause, that's a "non category".
Yeah but the folks at the DSM will love it.
 

Aurator

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If we take a biomedical viewpoint then 'psychogenic' does not really mean anything. The problem with the people who talk 'biopsychosocial' is that they never really say what they mean. The bit you quote looks entirely biological to me and mostly does say what it means. I think the difficulty lies in the use of the word belief, which is ambiguous.

It is all difficult to tease out but I think if psychogenic means anything it means that some conscious thought process at the sort of level that we normally regard as modifiable by social interaction feeds in to production of symptoms we normally think of as arising from the body. Edwards is definitely not suggesting that. He is putting the error mechanism at a much lower brain level. Many patients may feel that their illness is not generated by an error in the brain at all - and I would agree that is highly likely. However, I think it is entirely consistent with a biological approach to suggest that some cases are. I think maybe Edwards's chief mistake is to try to find a single all encompassing model.
Yes, admittedly the term psychogenic is potentially a very broad one. I used it quite narrowly.

Edwards seems to address the question of how consciously the thought processes operate in the section of his paper headed "the problem of voluntariness". He says there:
"However, as discussed in more detail above, we suggest that the majority of symptoms are associated with the (conscious) direction of attention towards abnormal symptom-related prior beliefs."
Maybe the crucial point is that he is not saying it is at a "level modifiable by social interaction"; it's difficult for me to say at present as I've not yet arrived at a coherent understanding of his overall message. I need to read it more closely and probably get my head round some very basic things first. Discussion helps speed up the second bit.
.
 
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Thankyou for addressing my question. However you still haven't answered this part from the post you quoted......



Perhaps now is the time to address it with the MRC if you think it would be inappropriate for him to use the Oxford criteria or anything resembling it.

After all with a term as broad as "functional neurological disorders" surely the cohort matters and the MRC should be taking a position on it seeing as they are spending 600K of mine and other peoples tax pounds to give us a better understanding of the biomedical issues in neurological ME the term coded at G93.3 in the ICD by the WHO.
How can we give an opinion on the criteria he uses if we do not know what the study is yet?
 
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Yes, admittedly the term psychogenic is potentially a very broad one. I used it quite narrowly.

Edwards seems to address the question of how consciously the thought processes operate in the section of his paper headed "the problem of voluntariness". He says there:
"However, as discussed in more detail above, we suggest that the majority of symptoms are associated with the (conscious) direction of attention towards abnormal symptom-related prior beliefs."
Maybe the crucial point is that he is not saying it is at a "level modifiable by social interaction"; it's difficult for me to say at present as I've not yet arrived at a coherent understanding of his overall message. I need to read it more closely and probably get my head round some very basic things first. Discussion helps speed up the second bit.
.
Actually that bit in italics looks pretty ropy to me as someone who spends a lot of time researching consciousness. Some tidying up is needed. But then the trouble is that virtual all of neuroscience in this area wanders off proper physical science and fails to define its terms. Mark Edwards is no worse than the rest of them probably. This is where it is so ironic that both the psychiatrists and the neuroscientists go around ridiculing 'Cartesian dualism' when they do not even understand what that means and they commit the crime they are criticising in a far worse form than Descartes himself - but that is getting into philosophy a bit too much for here.
 

Hutan

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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.
Mark Edwards' idea of predictive coding (as described in his hysteria paper) is very much in line with Wessley/White thinking. There is a precipitating factor e.g your leg gets hurt. Your brain comes to expect pain in your leg and predicts that there is pain. When there is no longer pain, there is discordance between what is expected and what is happening. The brain doesn't like this and so, rather than adjust the expectation from 'there is pain' to 'there is no pain', somehow the brain registers pain. This creates concordance.

The person then assumes that they have a physical illness causing the pain and this strengthens the expectation of pain (and therefore the perception of pain). He claims that that there is evidence that people with poor learning styles (ie leaping to conclusions) are more prone to this type of problem happening.

He has hypothesised that CFS works by the same mechanism; a precipitating illness (eg a viral infection) leads the brain to expect to feel fatigue, muscle pain and more. When the illness is over, there is concordance gain if these illness sensation continue to be registered.
 
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Mark Edwards' idea of predictive coding (as described in his hysteria paper) is very much in line with Wessley/White thinking. There is a precipitating factor e.g your leg gets hurt. Your brain comes to expect pain in your leg and predicts that there is pain. When there is no longer pain, there is discordance between what is expected and what is happening. The brain doesn't like this and so, rather than adjust the expectation from 'there is pain' to 'there is no pain', somehow the brain registers pain. This creates concordance.

The person then assumes that they have a physical illness causing the pain and this strengthens the expectation of pain (and therefore the perception of pain). He claims that that there is evidence that people with poor learning styles (ie leaping to conclusions) are more prone to this type of problem happening.

He has hypothesised that CFS works by the same mechanism; a precipitating illness (eg a viral infection) leads the brain to expect to feel fatigue, muscle pain and more. When the illness is over, there is concordance gain if these illness sensation continue to be registered.
That is interesting because it seems to me to be completely incompatible with the concept of predictive coding as developed by people like Hohwy. But that would not be a particular surprise.
 

Large Donner

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How can we give an opinion on the criteria he uses if we do not know what the study is yet?
Its simple its funded by the MRC to supposedly address the biomedical sides of ME and is going to be somehow related to "functional neurological disorders".

Somehow the conclusion seems to have already been reached that ME is a "functional neurological disorder" in for this study otherwise why is he getting money from an ME fund on biomedical issues.

That (FND) is totally meaningless as its already been pointed out here that the only thing to qualify that is the claim that something is yet to be explained.

Therefore if the oxford criteria is used it will be weak in the use neurological signs and symptoms and patients and we will be left with the same type of cohort used in PACE.

Then a conclusion can be spun out that the findings somehow relate to a condition called ME and represent people like me when blatantly they wouldn't. Just like the PACE trial.

Then those findings can be used to support notions of GET and CBT being curative if only people would try hard enough and stop being in denial about functional neurological disorders.

Then the current Nice Guidelines will be continually endorsed.

Then people will keep being told they are mentally ill for believing they are physically ill and sometimes even sectioned for it.

Then children will be under threat of being taken away from their parents like they are now.

Then the government can move into more benefit cuts on the disabled and even into areas where they insist on certain treatments being undertaken just as insurance companies do.

I do not want the Oxford criteria to represent my condition to the public, to my GP, or to "form interventions for treatments".

Simple.
 

Snowdrop

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I guess time will tell. The research is going forward, for better or worse, so we'll know in a couple of years whether Dr Edwards is following his history of hysteria and the like or has made a sudden and unexpected right turn into solid biomedical research without any psychobabble assumptions in play. I'm not holding my breath.
I'm considering holding my breath all tantrumy like :rolleyes: But then again, I think I'll maintain my rise above their level of dealing.
 

Snowdrop

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This is where it is so ironic that both the psychiatrists and the neuroscientists go around ridiculing 'Cartesian dualism' when they do not even understand what that means and they commit the crime they are criticising in a far worse form than Descartes himself - but that is getting into philosophy a bit too much for here.
Seems an important point in need of clarification in order to proceed with research.
 

alex3619

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Seems an important point in need of clarification in order to proceed with research.
This has been criticized many times. Its a lot like a simplistic notion of communism. Everyone is equal, but some are more equal than others. In this case its more mind and body are one, but mind is what matters. I want to know, if they really hold this view, why they do not talk about mind and body are one, but body is more important. Somehow they never get to that. Nor do things have equal footing.

In biopsychosocial theory they argue that disease has biological, psychological and social dimensions. It does, but I would add at the very least the environment. Somehow, from that underpinning, thy go on and on about mind as though biology is not important. The social aspect is emphasized in the BPS ideal on how to fix problems in society. Its again nearly all about the psychology of the person. Other things get a brief mention then get ignored.

I have been saying for a long time BPS adherents are commonly Cartesian dualists. As a physicalist monist (kind of, long discussion there, because labels become difficult when considering emergent properties and dynamic feedback) I have a real problem with that. What we call mind is, in my current view, simply a description of the operation or outcome of brain, and hence body.