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

[Research 1st]

The research collaborative is apparently the psych lobby with a new name, hardly surprising as the MRC are involved. (The MRC historically have refused funding for biomedical research and only funded psychiatry).
No MRC funded study has even been produced for ME, of any worth. The research of worth, is privately funded, away from the state (what a surprise again).

It's easy to despair looking at the British denial of ME (on first glance), but then you realise they are the current laughing stock of CFS research globally, so not reflective on the true science. Thank heavens for the Norwegians, Japanese, Americans (at Stanford) and other people not trapped under the hypnotic trance of Marxism influencing health care delivery, influencing decision making of what area is 'best' to study, by excluding the patients with actual signs of neurological and immunological disease.

If we compare the stubbornness of the mind-body theorists inability to evolve with the science Vs the intelligence of Fluge + Mella trying chemotherapy in patients who reported the treatment unexpectedly helped their 'CFS' (leading to a surprising finding of autoimmunity in 'CFS') there is a stark contrast in scientific knowledge and ability in both countries.

Fluge and Mella's first paper was published in 2009. Within only 10 years of trying, and on a budget mostly based on charitable donations, the Norwegian pair will have transformed biomedical research in early stage ME by listening to the patient, and using scientific tests, rather than the British approach of being fattened on psychology research funding only to waste it on theories of functional symptoms based on the mind causing fatigue, that have failed for 30 years.

No matter how hard the spin doctors try, it is what is. Same old, tired, unproven, theory always based on fatigue not on the core universal trait of ME - Orthostatic Intolerance - already explained by autonomic dysfunction, blood flow abnormalities, and low blood volume findings in research years ago.

Still, we see no science in view from the discussions we have read in this 'conference', and so no actual progress with treating the original disease based patients suffering from a crippling, acquired, neuroimmune disease of infectious onset causation who have a myriad of abnormal test results that could now be used to diagnose them on the spot (using ME-ICC not Fukuda or modified Fukuda).

The cause of the academic impotence, is the diagnostic criteria. Fatigue based research will find precisely nothing organic if the 'patient' is diagnosed on subjective self reported symptoms. This is 6th grade stuff here, not University level material!

Disease signs: such as reduced cardiac output on or after exercise, and altered central nervous system tone is far more suitable to select who to research (ME sufferers), rather than tired people. (If someone aged 10 can work this out, why are 50 years old with Phd's unable to process this?).

It's almost as if they want to be remembered in history as keeping patients with ME ill on purpose, by steadfastly refusing to seperate ME from CFS with the psych patients in the fatigue group, and the autoimmune infection patients in the other.

Why is that so hard to comprehend that to research correctly, this needs to be done to make progress? Such a tragic waste of people's lives therefore, who remain sick, with no treatments available.

 

[alex3619]

listening to the patient

This is one of the oldest principles in modern medicine, sometimes cited as "the patient tells you the diagnosis". Its frequently ignored these days. That might not be entirely about the docs though, but the reimbursement system. They only have a little time to jump to a conclusion before the appointment is over. Those who make their career out of babble are different though, and that isn't every psychiatrist but still far too many. Those who are well grounded in science, and that is proportionally not many docs, are different again.

 

[alex3619]

The cause of the academic impotence, is the diagnostic criteria. Fatigue based research will find precisely nothing organic if the 'patient' is diagnosed on subjective self reported symptoms. This is 6th grade stuff here, not University level material!

I think this is more a consequence. The cause is the methodological approach in bad psychiatry and a few other disciplines. They have an idea, in this case that CFS or ME are mental disorders, and then assemble data that might, if you look at it the right way, be considered as supporting the idea. Contrary evidence is somebody elses problem.

The Oxford criteria, it seems to me, derives from the notion that ME is psychiatric (which dates to 1970 - Beard and McEvedy - and came from research in which patient records but no patients were examined). If so, then its probably just the same as other fatiguing psych disorders. No, don't bother me with facts, or science, or logic or reason. [sarcasm]

An alternative view is they wanted something really simple for diagnosis, and they have all these patients with fatigue, so they just simplified it to stupidity. The psych theorists then latched onto that because they can spin it to support their idea, and design studies that do not test their theory properly but that can also be spun to support their idea.

I use "idea" rather than "thesis" or "hypothesis" as this approach does not deserve to be called scientific.

With enough money, care, time and resources then you could find a cause and cure for ME from almost any cohort. Its just that it becomes harder and harder, and more and more expensive, and so it never happens that way.

I don't think self reported symptoms are always a big issue by themselves. However when you are using that in combination with psychiatric modification of how they view those symptoms, its a recipe for bias, bias and more bias. What are you measuring? What if its just improvement in how possibly severe symptoms are viewed, with no actual improvement or even worsening?

Objective outcome measures are necessary to have any claim to even dubious certainty.

 

[SOC]

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.

{Snicker} "Poor learning styles, ie leaping to conclusions" Now who does that sound like? Ahem.... doctors... er... BPS practitioners... Is somebody perhaps projecting just a little bit here?

 

[elliepeabody]

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.

Thanks for explaining this so clearly.

So, does this occur in other areas of medicine, for example where someone has a fracture? Do people continue to perceive pain after the fracture appears to have healed and if so is this attributed to poor learning styles and abnormal beliefs? Are they then referred for CBT / GET to address their learning and beliefs?

It strikes me that an approach of poor learning styles and abnormal beliefs puts the psychiatrist in a position of great power over the patient, which is disturbing to say the least as it creates a reality where it is not necessary, indeed, it is unhelpful to actually listen to what the patient says about their body.

 

[A.B.]

{Snicker} "Poor learning styles, ie leaping to conclusions" Now who does that sound like? Ahem.... doctors... er... BPS practitioners... Is somebody perhaps projecting just a little bit here?

They should have learned ages ago that psychosomatic medicine is a null field that has never produced anything of value and is based on bad science, deceptive and persuasive use of langugage, and outright falsification of data.

 

[Sean]

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...

A legitimate response to much of their claims is to just say: 'Take a look in a mirror.'

 

[Valentijn]

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.

Yes, there's nothing wrong with studying fatigue. However PACE and other BPS research is being marketed as being an ME study during the funding process, and they claim the results extend to ME patients in their title, abstract, and media interviews. We have to beat them off with a stick, but still end up getting hit by their fatigue research.

And the specific problem with studies recruiting based on Oxford is that they aren't even potentially applicable to ME patients. Oxford requires that fatigue be the primary symptom, whereas ME patients will have PEM, pain, OI, etc, as much more prominent symptoms.

 

[Jonathan Edwards]

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.

Maybe since Snowdrop thinks it is important we should discuss the knotty philosophy a bit more. What you are voicing, Alex, with some admirable caution, is in fact what I consider the confused position taken by the neuroscientists. I used to think this was the right approach but then I started studying Descartes. I am currently preparing a chapter for a book to be published next year on categories in philosophy of mind dealing with what Descartes actually meant.

Descartes was not a dualist in the sense all the textbooks claim. He was a physicist. He concluded that all the dynamic relations in the world we can perceive follow 'mechanical' laws - essentially one thing pushing another out of the way. But having worked this out he saw that thought could not be mechanical. Savouring the sight and aroma of a perfect paella is not one thing pushing another out of the way. So he decided that 'thinking things' cannot be mechanical.

The important thing to remember is that physics was at a very early stage in 1641. Nobody knew about electromagnetism. In fact even by 1670 Descartes 'mechanical' laws for matter were in shreds because of the work of Huygens and Hooke. It was clear that even ordinary matter did not relate just by one thing pushing another, but rather by the action of invisible internal elastic forces (which turned out to be electromagnetic). Newton then smashed the whole idea with his gravity. By 1695 Leibniz had worked out that Descartes mistake was simply not to realise that at the fundamental level everything works like thought or electromagnetism do and that 'matter' is just an illusion arises when things aggregate. Three hundred years later the condensed matter physics of quantum field theory shows Leibniz was spot on, but in the intervening years the naive idea of physical matter prevailed at least in school classrooms.

The bottom line is that Descartes's idea of a soul is very much part of physics and he intended it to be. Now that might seem to get us back to mind = brain. But the reason why Descartes put the soul in the pineal is that he understood a basic principle of physics that modern neuroscience tries to ignore - the law of locality. In simple terms a conscious thought or experience, to be a physical event, must be in a single place. All this stuff about emergence from neural networks has to be rubbish. A sentient soul cannot be the entire brain, or even a lobe or gyrus or network. In this sense the mind must be something quite different from the brain - something much more local. Crucially, as both Descartes and Leibniz understood it cannot be an aggregate; it must be a genuinely single unit.

I don't want to go into the technicalities of how you then work out exactly what a 'sentient soul' or 'thinking thing' is but some simple conclusions can be drawn. Firstly, everything must be physics and obey locality - as Descartes understood but neuroscientists have forgotten. Secondly, to make theories like those of Hohwy or Mark Edwards testable you have to specify the exact location of conscious images within the brain, how many there are of them at any one time and what sort of code they are constructed in. You have to take physics seriously and jettison all the 'systems theory' that has become a fashionable way to sidestep science.

I have spent the last fifteen years going down this route and the possibilities that you discover are very weird indeed, but if you stick to locality it becomes clear that they can make sense. What to me is fascinating is that Leibniz went down the same route 300 years ago and came to much the same strange conclusions. Neuroscience is still behind Leibniz because nobody thinks rigorously. The one person I know within professional neuroscience who understands all of this is Semir Zeki - perhaps the most eminent vision neuroscientist of our time. He often comes to seminars from those struggling with popular theories but usually leaves with a twinkle in his eye saying 'nice talk but I could not understand a word of what he was saying'.

 

[Sidereal]

Secondly, to make theories like those of Hohwy or Mark Edwards testable you have to specify the exact location of conscious images within the brain, how many there are of them at any one time and what sort of code they are constructed in.

We wouldn't want to give him any ideas! Next thing you know there's an MRC grant application for an fMRI study to show that the "soul" of people with functional neurological syndromes is defective and looking for secondary gain.

 

[A.B.]

The methods and thinking involved in modern claims of psychosomatic disease are the same ones that in the past produced many false claims such as tuberculosis being a manifestation of a personality disorder.

http://journals.lww.com/psychosomat...uberculosis_and_Personality_Conflicts_.3.aspx

Correlation between thoughts, emotions and disease is assumed to mean that these factors cause disease. That these might just be a result of poor health, either through a biochemical mechanism, or due to circumstances of living with an illness, is not considered. If the correlation even exists! The tools used to measure these personality factors are prone to bias (from both the patient and researcher) and hard, if not impossible to interpret. The learning style test is a good example: it measures some difference between patients but we don't know what it is actually measuring. Yet the researcher assumes he knows exactly what is being measured. In the end it's all about the subjective interpretation by the researcher.

I don't mind innovative, unproven, explorative research, but psychosomatic medicine is basically a fraud. A long history of failures, obvious flaws, absence of results. They need to prove this class of illnesses even exists before getting any more research grants.

 

[Jonathan Edwards]

And the specific problem with studies recruiting based on Oxford is that they aren't even potentially applicable to ME patients. Oxford requires that fatigue be the primary symptom, whereas ME patients will have PEM, pain, OI, etc, as much more prominent symptoms.

The trouble is that this is a circular argument. If ME is a distinct pathophysiological entity like tuberculosis or haemophilia or autoimmune thyroid disease then you would expect some people with ME not to have PEM, or not to have fatigue or not to have OI, just as some people with tuberculosis have no cough, some people with haemophilia have no bruises and some people with autoimmune thyroid disease have no skin changes. So ME is a syndrome term at present, not a distinct pathophysiology. And even when we do work out the pathophysiology we will discover that there are all sorts of overlapping ways to define the abnormalities - just as there are for the other conditions.

Experience in other conditions, for me RA and for my epidemiological colleague everything under the sun, tells us that getting hung up on criteria is counterproductive. What you need to do is choose the criteria for each study that are relevant to the question being asked. So far I have no clear idea what the proposed project will involve. However, if it is a follow on from Neil harrison's work with typhoid vaccine then the appropriate criteria may be 'healthy normal person'. As far as I know what they may be planning to do is study model mechanisms in normal people. It may then be useful to add in groups with fatigue and then groups with PEM to see how each feature is relevant but I have never been a fan of any of the sort of criteria that clinicians tend to dream up - where you add up any of a number of different features so that scientifically you have no idea what you are correlating with what. All this talk of Oxford criteria seems completely irrelevant to me until we know what the experiments are.

I am all in favour of a tough critique but I think it is best to keep the powder dry by making the critique on target.

 

[Jonathan Edwards]

We wouldn't want to give him any ideas! Next thing you know there's an MRC grant application for an fMRI study to show that the "soul" of people with functional neurological syndromes is defective and looking for secondary gain.

They may already think they are doing that. (Except that I do not see secondary gain being on Edwards's agenda - his approach seems much more neurobiological.) The point of pinning down where souls are is that it would make clear that fMRI will not show them because it does not have the resolution.

 

[Sidereal]

They may already think they are doing that.

Great. "So you guys thought PACE was bad or you were upset about decades of hypothesising about child abuse and personality disorders. Now we're going for the jugular: your very soul is abnormal."

I would consider that the ultimate diss. Just what this patient community needs.

 

[anniekim]

Someone has written out a transcript of Dr Mark Edward's presentation https://docs.google.com/document/d/1f3FsqRgzLiah_mbMi1j7nDoUih5auUf8VJv03kjnsUQ/mobilebasic

 

[MeSci]

Prof Newton up now talking about the large cohort study and how they were able to look at a number of aspects at the same time.

Cardiac MRI showed reduced cardiac volume, secondary to deconditioning ? Also measured plasma and red cell volume. Confirmed cardiac abnormality.

More fatigued patients had lower plasma volume, but no link to length of time that they had illness. Potentially gives therapeutic target. Submitting application to see if IV bolus of fluid will help.

She doesn't say why plasma volume is lower than it should be, any theories on this ?

In my case, polyuria. A lot of us seem to have this. Sorry if it's already been said - I can't keep up!

 

[alex3619]

I have spent the last fifteen years going down this route and the possibilities that you discover are very weird indeed, but if you stick to locality it becomes clear that they can make sense.

What Descarte actually meant and what it means today are different things. I doubt you will convince a modern dualist using arguments from that time. Indeed much of modern dualism pretends to be monism.

The point about a physicalist monist position is that it is scientifically testable in principle, even if we cannot do it today. Its also the most simple hypothesis. Nobody can rule out the possibility of mind or soul at this point, but eventually we will understand to a great extend what the brain is doing, and there will not be many places for mind to hide at that point unless something remains that is largely inexplicable. However I suspect that if mind does exist it will be explicable in physical terms even we we cannot do it now.

However one can argue that mind is emergent property/properties of brain. This is still physicalist, but allows that the complexity and dynamics of interaction. Such emergent properties might be labelled mind, but mind is just a label, a description of the operation or output (including internal output that feeds back to the brain).

I have an artificial intelligence, philosophy of mind, systems theory background, and it does influence my position on this. My PhD candidacy was on composite neural modelling, looking at problems of categorization. I had to stop when I could no longer read nor even count to three.

In this view mind is a convenient label. Labels do not define reality though.

I think there are some long threads on philosophy of mind lurking about PR somewhere from long ago. @Hip also has opinions on this iirc, though slightly different to mine. While very esoteric I think it does shed some light on the whole biopsychosocial argument.

I would be very interested to read what you have written though.

 

[Simon]

Transcript of Mark Edwards' talk, courtesy of Russell Fleming (@Firestormmer)

oops: https://docs.google.com/document/d/1f3FsqRgzLiah_mbMi1j7nDoUih5auUf8VJv03kjnsUQ/edit

 

[Jonathan Edwards]

However one can argue that mind is emergent property/properties of brain. This is still physicalist, but allows that the complexity and dynamics of interaction. Such emergent properties might be labelled mind, but mind is just a label, a description of the operation or output (including internal output that feeds back to the brain).

Sorry, Alex but you have missed my point (maybe all my points!). Emergentism is incompatible with physicalism because it is non-local. It posits some new law that applies inside brains to explain the internal relation between dynamics and experience that is incompatible with the (localist) laws that govern the relation of external dynamics to experience. It is very popular but completely incoherent as a part of physics. It is dualist in a much more troublesome way than Descartes. Descartes's dualism was testable - you take out the pineal for pinealoma and the person is fine - theory tested and refuted. You cannot test an emergentist network theory because you can always say your predictions are dependent on what is happening somewhere else as well at the same time. Physics has no room for that. Real emergence does occur in condensed matter physics but it is the emergence of new individual dynamic modes - which are indivisible, unlike networks which are aggregates of events.

The sentient soul is not just possible, it has to be postulated to explain sentience. However, like Descartes we want it to be within physics. Nobody is looking for a soul outside physics - except the naive religious community who thought that was what Descartes was suggesting. Souls are probably rather mundane neural entities, in the way that mitochondria are. They have no special emotional connotations. They do not have 'free will' or anything spooky like that.

But I think we are digressing from the matter in hand.

 

[Sasha]

But I think we are digressing from the matter in hand.

With all this confusion over exactly what Martin Edwards's award is for and all this talk of brain soap (nice term!) I have lost sight of the big picture on the conference.

I must admit that I couldn't actually hear most of the presentations, due to the poor sound quality, and of course we couldn't see any of the slides and a lot of the stuff was embargoed so we didn't see it at all.

High points for me in terms of cheering me up were Prof Holgate, Dr Fluge (even though he was invisible), Dr Montoya and Prof George Davey Smith. If I had been able to hear enough of what anybody else said, I might be able to name more.

My impression was that we're still at a difficult transition point in terms of ME/CFS research in the UK and that I'd like to have seen more of the sort of biomedical scientists who attend the IiME meetings attending this conference and helping to boost the biomedical team and crowd the BPS nonsense out.

What's your overall take, @Jonathan Edwards?