Michael Sharpe: "Chronic fatigue syndrome: Neurological, mental or both" incl. PACE

[Angela Kennedy]

But what Sharpe and others are arguing is that with the development of neuropsychiatry as a discipline largely replacing the classic conceptual divisions of 'brain illness' and 'mental illness', then the formerly used classification differentials may no longer apply.

They may be arguing this, but this doesn't make their argument plausible. They are claiming that the brain in synonymous with an abstract concept of the mind (or of the act of thinking). This belief is untenable for many reasons that people have been trying to address for many centuries.

That Sharpe is using the argument for self serving purposes isn't an effective counter argument, and while it is true there's a turf war between the neurochemists and the neuropsychiatrists based around the chicken and egg percept of whether mental illness precipitates abnormal brain chemistry, or whether it's chemistry that precipitates illness, that does not provide an adequate rebuttal to Sharpe's (implied) 'conflationist' argument that 'fatigue conditions' are both mental and neurological.

Who here has made that argument? I haven't certainly . I'm arguing his presumptions (and yours) are incorrect, not self-serving.

A purist postion on classification is no longer feasible - even on this forum we have people arguing for both various and multiple disease causations, there may be pragmatic reasons to seek specific classifications with ICD -11 and the US opt out version but the key thing for long term progress is to require research $//Es going toward aetiology irrespective of where M.E/CFS sits in any classification system or which particular medical discipline wants to claim 'possession'.

The 'chicken or egg' argument is itself specious. There are known neurological conditions that affect behaviour, perception, responses. These tend to have been discovered through the laborious process of science. Beliefs in psychogenic illness, on the other hand are much less safe, both because of the lack of verifiable scientific evidence, and the tendency towards ad hoc literary, even quasi religious theory present in much psychiatric and psycho-analytical discourse. Psychogenic explanations currently are founded on various logical fallacies that Sharpe exhibits even in the examples on this thread: "A causes B therefore B must cause A"; "I don't know what physical mechanism is disordered therefore it must be metaphysical";
The old fallacy of the third way ("It's a little bit of this and a little bit of that", "I've moved beyond dualism. Aren't I clever?"); "I can't decide if you're a faker, a hypochondriac, or your ability to think controls your body in ever increasing ways, therefore I'm going with an eclectic mixture of all three"; "Let's invoke the god of the gaps by the act of balck-boxing"- and so forth.

Your use of the word 'purist' is wrong. By your argument, diabetes should be classified as psychological as well. In fact, current attempts are to make everything 'a little bit psychological' in the new DSM (hence the somatic symptoms disorder categorisations). And that is all based on the fallacy of psychogenic diagnosis by default in areas of uncertainty in medical knowledge.

The argument against so-called 'purism' is actually an argument against clarity and logic (I'd also say scientific method).

I note you have not addressed the fact the psychs are so desperate to classify ME/CFS in F48.

 

[Esther12]

re neurology vs psychology:

A vital distinction for me is the permissibility of the paternalistic deception and manipulation of patients. Doctors are allowed to talk to those with psychiatric conditions in a way that would not be acceptable with neurological conditions.

I don't like being treated like this, and think it could only be acceptable if there's good objective evidence that I am mentally disturbed in some way. The astounding realisation that our minds might have something to do with our brains does nothing to change that.

 

[Angela Kennedy]

re neurology vs psychology:

A vital distinction for me is the permissibility of the paternalistic deception and manipulation of patients. Doctors are allowed to talk to those with psychiatric conditions in a way that would not be acceptable with neurological conditions.

I don't like being treated like this, and think it could only be acceptable if there's good objective evidence that I am mentally disturbed in some way. The astounding realisation that our minds might have something to do with our brains does nothing to change that.

Well yes Esther. That is yet another problem around claims of 'mental illness' causing physiological impairment. Where responses to being ill are psycho-pathologised and presented as cause of said illness. This is a key problem in psychiatric discourse on ME/CFS (notions of 'catastrophizing' and 'kinesiophobia' applied to people attempting to cope with their abnormal physiological response to exercise, as just one example).

There are many sociological problems to be addressed about the act of diagnosing as 'mentally ill', or 'personality disordered' etc. even without the thorny problem of unsafe psychogenic explanations. Psychiatrists in this area in particular appear often to be completely unaware of their own capacity for 'psychologist's fallacies' and how their own ideological assumptions inform their beliefs about patients, rendering them unsafe. They have no capacity for reflexivity, a key social scientific tool to check the validity of social scientific claims and constructs. That is a major problem in this field in particular.

 

[WillowJ]

But what Sharpe and others are arguing is that with the development of neuropsychiatry as a discipline largely replacing the classic conceptual divisions of 'brain illness' and 'mental illness', then the formerly used classification differentials may no longer apply. That Sharpe is using the argument for self serving purposes isn't an effective counter argument, and while it is true there's a turf war between the neurochemists and the neuropsychiatrists based around the chicken and egg percept of whether mental illness precipitates abnormal brain chemistry, or whether it's chemistry that precipitates illness, that does not provide an adequate rebuttal to Sharpe's (implied) 'conflationist' argument that 'fatigue conditions' are both mental and neurological. A purist postion on classification is no longer feasible - even on this forum we have people arguing for both various and multiple disease causations, there may be pragmatic reasons to seek specific classifications with ICD -11 and the US opt out version but the key thing for long term progress is to require research $//Es going toward aetiology irrespective of where M.E/CFS sits in any classification system or which particular medical discipline wants to claim 'possession'.

IVI

um, did you look at the studies I posted? they didn't have anything to do with brain chemistry.

I suppose it was a bit of a sidetrack from purpose of thread... but my point was that standard neurologist have no good reason to reject us from their specialty. Probably the reason they do this is because Chalder et al. are so busy telling everyone that we are psych patients. They can hardly blame other specialties for not taking us, when they insist so repeatedly, that the main thing wrong is mental (well, yes and physical, but the physical is subserviant to the mental, if you bring up the physical you are making a serious philosophical error)

 

[Angela Kennedy]

um, did you look at the studies I posted? they didn't have anything to do with brain chemistry.

I didn't argue for any specific classification; I stated only that neurological pathology (and not based on brain chemistry!) does indeed exist.

do you have a particular classification to suggest?

Gynaecology. Because classification really doesn't matter...

 

[WillowJ]

Well yes Esther. That is yet another problem around claims of 'mental illness' causing physiological impairment. Where responses to being ill are psycho-pathologised and presented as cause of said illness. This is a key problem in psychiatric discourse on ME/CFS (notions of 'catastrophizing' and 'kinesiophobia' applied to people attempting to cope with their abnormal physiological response to exercise, as just one example).

There are many sociological problems to be addressed about the act of diagnosing as 'mentally ill', or 'personality disordered' etc. even without the thorny problem of unsafe psychogenic explanations. Psychiatrists in this area in particular appear often to be completely unaware of their own capacity for 'psychologist's fallacies' and how their own ideological assumptions inform their beliefs about patients, rendering them unsafe. They have no capacity for reflexivity, a key social scientific tool to check the validity of social scientific claims and constructs. That is a major problem in this field in particular.

exacty. they never attempt to test their a priori assumptions

 

[WillowJ]

Gynaecology. Because classification really doesn't matter...

rofl

 

[WillowJ]

post #44 revised

 

[WillowJ]

re neurology vs psychology:

A vital distinction for me is the permissibility of the paternalistic deception and manipulation of patients. Doctors are allowed to talk to those with psychiatric conditions in a way that would not be acceptable with neurological conditions.

I don't like being treated like this, and think it could only be acceptable if there's good objective evidence that I am mentally disturbed in some way. The astounding realisation that our minds might have something to do with our brains does nothing to change that.

I think actually the way they talk to/about us, is not usual in standard psychiatric disorders. You do not correct schizophrenia with CBT, and you are expected to have empathy for the bipolar disorder patient. You do not tell them there is no pathology causing their symptoms, or that they can control it. You tell them their brain is broken and they need medicine.

 

[Dolphin]

I suppose it was a bit of a sidetrack from purpose of thread... but my point was that standard neurologist have no good reason to reject us from their specialty. Probably the reason they do this is because Chalder et al. are so busy telling everyone that we are psych patients. They can hardly blame other specialties for not taking us, when they insist so repeatedly, that the main thing wrong is mental (well, yes and physical, but the physical is subserviant to the mental, if you bring up the physical you are making a serious philosophical error)

Yes, it's an important point: classifications should ideally be based on people who are aware of all or most of the facts. If the neurologists know very little about the condition, or they have been fed very selective information, then they/their opinions should not necessarily be the final arbiters of the classifications.

 

[Snow Leopard]

the key thing for long term progress is to require research $//Es going toward aetiology irrespective of where M.E/CFS sits in any classification system or which particular medical discipline wants to claim 'possession'.

The problem is that being captured by psychiatry is negative sum in terms of research funding. When researchers find that there are 'no specific biomarkers' and the only 'evidence based treatment' is CBT/GET, most of them are going to steer clear unless they actually know people who suffer from the disease. It becomes a bit of a catch-22 unfortunately.

 

[In Vitro Infidelium]

But what Sharpe and others are arguing is that with the development of neuropsychiatry as a discipline largely replacing the classic conceptual divisions of 'brain illness' and 'mental illness', then the formerly used classification differentials may no longer apply.

They may be arguing this, but this doesn't make their argument plausible. They are claiming that the brain in synonymous with an abstract concept of the mind (or of the act of thinking). This belief is untenable for many reasons that people have been trying to address for many centuries.

That Sharpe is using the argument for self serving purposes isn't an effective counter argument, and while it is true there's a turf war between the neurochemists and the neuropsychiatrists based around the chicken and egg percept of whether mental illness precipitates abnormal brain chemistry, or whether it's chemistry that precipitates illness, that does not provide an adequate rebuttal to Sharpe's (implied) 'conflationist' argument that 'fatigue conditions' are both mental and neurological.


Who here has made that argument? I haven't certainly . I'm arguing his presumptions (and yours) are incorrect, not self-serving.

A purist postion on classification is no longer feasible - even on this forum we have people arguing for both various and multiple disease causations, there may be pragmatic reasons to seek specific classifications with ICD -11 and the US opt out version but the key thing for long term progress is to require research $//Es going toward aetiology irrespective of where M.E/CFS sits in any classification system or which particular medical discipline wants to claim 'possession'.

The 'chicken or egg' argument is itself specious. There are known neurological conditions that affect behaviour, perception, responses. These tend to have been discovered through the laborious process of science. Beliefs in psychogenic illness, on the other hand are much less safe, both because of the lack of verifiable scientific evidence, and the tendency towards ad hoc literary, even quasi religious theory present in much psychiatric and psycho-analytical discourse. Psychogenic explanations currently are founded on various logical fallacies that Sharpe exhibits even in the examples on this thread: "A causes B therefore B must cause A"; "I don't know what physical mechanism is disordered therefore it must be metaphysical";

The old fallacy of the third way ("It's a little bit of this and a little bit of that", "I've moved beyond dualism. Aren't I clever?"); "I can't decide if you're a faker, a hypochondriac, or your ability to think controls your body in ever increasing ways, therefore I'm going with an eclectic mixture of all three"; "Let's invoke the god of the gaps by the act of balck-boxing"- and so forth.

Your use of the word 'purist' is wrong. By your argument, diabetes should be classified as psychological as well. In fact, current attempts are to make everything 'a little bit psychological' in the new DSM (hence the somatic symptoms disorder categorisations). And that is all based on the fallacy of psychogenic diagnosis by default in areas of uncertainty in medical knowledge.

The argument against so-called 'purism' is actually an argument against clarity and logic (I'd also say scientific method).

I note you have not addressed the fact the psychs are so desperate to classify ME/CFS in F48.

All of this is locked into a position of 'being correct'. The problem is 'being correct' is irrelelevant - having legitimacy is what matters because that is what defines who is and who is not listened to. You can carry on critiquing psychiatry for the next 30 years but will you or anyone who writes on this forum ever influence medicine with such critiques ? I doubt it. Meanwhile the effect of 'not being heard' creates a 'misery vortex' in which those of us affected by M.E/CFS sit discontentedly in righteous indignation 'knowing' we 'know better' than the medics but are confronted with bureacratic and political indifference because we do not have professional legitimacy.

At this point unless there's articulation of a much smarter discourse I'd say the equation of CFS with Neurasthenia in ICD-11 was a slam dunk and the neurological designation could actually be lost if there's a concerted challenge to its conservation.

Classification does matter for practical purposes but warring with the 'opposition' when the opposition holds the high ground (no matter how undeserved) and outguns you by an order of magnitude isn't going to achieve anything other than a glorious defeat. I used the term purist quite deliberately because it precisely defines the position that so much M.E/CFS dialogue is expressed from. My argument is that a more grubby street level approach of deal and compromise is what we need to progress, and that is actually what the often derrided M.E/CFS orgs actually engage in. Collectively I think we need to stop being so pathological about being 'right' and work on being 'heard' in ways that matter. Petulent complaints to Journals and footstamping ersatz Actup may be emotionally satisfying but what what is heard from that will not effect change, something rather more subtle is required.

IVI

 

[In Vitro Infidelium]

I think actually the way they talk to/about us, is not usual in standard psychiatric disorders. You do not correct schizophrenia with CBT, and you are expected to have empathy for the bipolar disorder patient. You do not tell them there is no pathology causing their symptoms, or that they can control it. You tell them their brain is broken and they need medicine.

That is a very idealised view of psychiatry and while there has been progress in the last 30 years in terms of empowering and enabling psychiatric patients to have input and even control over their treatment, at heart psychiatry is, in most developed countries still, the bureacratisation of medicalised control. What other professionals are empowered by the State to enforce indeterminate imprisonment upon citizens ? even a Judge has to be presented with prima facie evidence of wrong doing before committing someone to time limited remand. Yet in many Countries two psychiatrists merely have to agree there are grounds for detention. The decisions to detain may in most cases be wholly in the best interests of the patient but nevertheless such power to detain has wide implications for the premise on which Psychiatry is founded.

Indeed Psychiatry operates under an expectation of compliance in a way that is only very limited in other medical disciplines and in the UK the Law has actually become far more draconian in the last decade meaning that individuals with serious mental health impairments are criminalised for not being compliant with the medication regimes demanded by psychiatrists

IVI

 

[In Vitro Infidelium]

Yes, it's an important point: classifications should ideally be based on people who are aware of all or most of the facts. If the neurologists know very little about the condition, or they have been fed very selective information, then they/their opinions should not necessarily be the final arbiters of the classifications.

The conditionality implied by should is at the heart of (what is IMO) the core problem that faces those affected by M.E/CFS in respect of classification. It is not difficult to define how the world should be, but effecting change involves dealing with the world as it is. The WHO doesnt operate on the basis of intellectual propriety, it is a bureaucratic entity responding to numerous internal and external pressures; medicine isnt some purist intellectual process, it is a global sociological process characterised by competing demands and interests, both personal and corporate.

In such a context should simply has no viability, what one has is a chaotic processing of deals, some of which are amenable to influence and if one actually wants to effect change, or even just hold a position, then the only option is to mix it in that market place in the hope that some of the loudest stall holders pick up and give value to the commodities in which one is seeking to trade. As things stand the psychiatry barkers are doing good business in CFS commodities, only by persuading other traders that theres profit to be made in bidding will the psychiatrists be prevented from cornering the market. Philosophical rectitude is simply irrelevant, instead we need a good sales pitch.

IVI

 

[In Vitro Infidelium]

The problem is that being captured by psychiatry is negative sum in terms of research funding. When researchers find that there are 'no specific biomarkers' and the only 'evidence based treatment' is CBT/GET, most of them are going to steer clear unless they actually know people who suffer from the disease. It becomes a bit of a catch-22 unfortunately.

That is certainly a concern, but the 'capture by psychiatry' isn't a single sided process, many disciplines are happy to 'off load' their more problematic patient groups to psychiatry. Gastroenterology started hiving off IBS to CBT practitioners 20 years ago (sort of swap for stomach ulcer sufferers) and any patient who is unco-operative enough not to respond to Rheumatology, Neurology and even Orthopaedics treatments risks getting a one way somatisation ticket to psychiatry. Capture by psychiatry is only possible because of ejection, rejection or indifference by other disciplines, and that ejection, rejection or indifference also impacts negatively upon research efforts. If change is wanted (I assume we are all agreed that is the case) then there is no choice but to pursue a campaign for increased research funding, and the question becomes whether classification is a fundamental element to that campaign, or whether it's a side issue which detracts from the primary focus; my argument is that it's a distraction, or indeed is even worse because it places the campaign(s) for research funding in an unnecessarily oppositional context.

IVI

 

[Dolphin]

All of this is locked into a position of 'being correct'. The problem is 'being correct' is irrelelevant - having legitimacy is what matters because that is what defines who is and who is not listened to. You can carry on critiquing psychiatry for the next 30 years but will you or anyone who writes on this forum ever influence medicine with such critiques ? I doubt it. Meanwhile the effect of 'not being heard' creates a 'misery vortex' in which those of us affected by M.E/CFS sit discontentedly in righteous indignation 'knowing' we 'know better' than the medics but are confronted with bureacratic and political indifference because we do not have professional legitimacy.

At this point unless there's articulation of a much smarter discourse I'd say the equation of CFS with Neurasthenia in ICD-11 was a slam dunk and the neurological designation could actually be lost if there's a concerted challenge to its conservation.

Classification does matter for practical purposes but warring with the 'opposition' when the opposition holds the high ground (no matter how undeserved) and outguns you by an order of magnitude isn't going to achieve anything other than a glorious defeat. I used the term purist quite deliberately because it precisely defines the position that so much M.E/CFS dialogue is expressed from. My argument is that a more grubby street level approach of deal and compromise is what we need to progress, and that is actually what the often derrided M.E/CFS orgs actually engage in. Collectively I think we need to stop being so pathological about being 'right' and work on being 'heard' in ways that matter. Petulent complaints to Journals and footstamping ersatz Actup may be emotionally satisfying but what what is heard from that will not effect change, something rather more subtle is required.

IVI

There are a variety of different ME/CFS organisations.

I agree with you that sometimes one has to make some sort of compromise in what one is saying. For me, using the term ME/CFS is a compromise while others dislike it.

However, compromise and getting agreement shouldn't be the goal in itself. If you become too focused on compromise and never show any teeth, one can be walked over.

Also, most patients will hopefully trust a group more if they show they're not afraid to criticise when necessary.

Also it comes down to what one considers core beliefs. So for example one group might argue that if they say often exercise programs cause problems because they're aren't done under an expert is some sort of success; however, I think fundamentally exercise programs can cause problems under all circumstances for ME patients and indeed the AfME/AYME survey found the percentages saying they were "made worse" were no different among those who had done them under NHS specialists.

But I do agree that sometimes people can be a bit intolerant of any compromises made.

Also one can get into medical journals if one approaches it the correct way. I've got quite a few letters into medical journals. Althought lots of letters that were not published by the Lancet have been highlighted, I know of 7 more that haven't been rejected, which hopefully means that they will be accepted.

 

[Dolphin]

That is a very idealised view of psychiatry and while there has been progress in the last 30 years in terms of empowering and enabling psychiatric patients to have input and even control over their treatment, at heart psychiatry is, in most developed countries still, the bureacratisation of medicalised control. What other professionals are empowered by the State to enforce indeterminate imprisonment upon citizens ? even a Judge has to be presented with prima facie evidence of wrong doing before committing someone to time limited remand. Yet in many Countries two psychiatrists merely have to agree there are grounds for detention. The decisions to detain may in most cases be wholly in the best interests of the patient but nevertheless such power to detain has wide implications for the premise on which Psychiatry is founded.

Indeed Psychiatry operates under an expectation of compliance in a way that is only very limited in other medical disciplines and in the UK the Law has actually become far more draconian in the last decade meaning that individuals with serious mental health impairments are criminalised for not being compliant with the medication regimes demanded by psychiatrists

IVI

As you probably know, but some others may not know, Thomas Szasz has made interesting observations like this on psychiatry.

 

[Dolphin]

Yes, it's an important point: classifications should ideally be based on people who are aware of all or most of the facts. If the neurologists know very little about the condition, or they have been fed very selective information, then they/their opinions should not necessarily be the final arbiters of the classifications.

The conditionality implied by should is at the heart of (what is IMO) the core problem that faces those affected by M.E/CFS in respect of classification. It is not difficult to define how the world should be, but effecting change involves dealing with the world as it is. The WHO doesnt operate on the basis of intellectual propriety, it is a bureaucratic entity responding to numerous internal and external pressures; medicine isnt some purist intellectual process, it is a global sociological process characterised by competing demands and interests, both personal and corporate.

In such a context should simply has no viability, what one has is a chaotic processing of deals, some of which are amenable to influence and if one actually wants to effect change, or even just hold a position, then the only option is to mix it in that market place in the hope that some of the loudest stall holders pick up and give value to the commodities in which one is seeking to trade. As things stand the psychiatry barkers are doing good business in CFS commodities, only by persuading other traders that theres profit to be made in bidding will the psychiatrists be prevented from cornering the market. Philosophical rectitude is simply irrelevant, instead we need a good sales pitch.

IVI

There may be some truth in what you say; at the same time, I still think if the issue of a survey of neurologists was brought up, it could be challenged to some extent by mentioning many may not know the literature that well.

 

[Angela Kennedy]

All of this is locked into a position of 'being correct'. The problem is 'being correct' is irrelelevant - having legitimacy is what matters because that is what defines who is and who is not listened to. You can carry on critiquing psychiatry for the next 30 years but will you or anyone who writes on this forum ever influence medicine with such critiques ? I doubt it. Meanwhile the effect of 'not being heard' creates a 'misery vortex' in which those of us affected by M.E/CFS sit discontentedly in righteous indignation 'knowing' we 'know better' than the medics but are confronted with bureacratic and political indifference because we do not have professional legitimacy.

At this point unless there's articulation of a much smarter discourse I'd say the equation of CFS with Neurasthenia in ICD-11 was a slam dunk and the neurological designation could actually be lost if there's a concerted challenge to its conservation.

Classification does matter for practical purposes but warring with the 'opposition' when the opposition holds the high ground (no matter how undeserved) and outguns you by an order of magnitude isn't going to achieve anything other than a glorious defeat. I used the term purist quite deliberately because it precisely defines the position that so much M.E/CFS dialogue is expressed from. My argument is that a more grubby street level approach of deal and compromise is what we need to progress, and that is actually what the often derrided M.E/CFS orgs actually engage in. Collectively I think we need to stop being so pathological about being 'right' and work on being 'heard' in ways that matter. Petulent complaints to Journals and footstamping ersatz Actup may be emotionally satisfying but what what is heard from that will not effect change, something rather more subtle is required.

IVI

Oh my god: the old "shut up and die with a curtsey and a brown nose" approach. That's your plan. Being correct is a BAD thing. Abiding by irrational appeals to authority is the way forward.

Go stupidity! Go! Go! Correct people are pathological you know!!!!

Wow.

 

[Esther12]

I think that 'should' and being 'right' are important claims to be able to make in a debate. While we need to recognise the current weakness of our position, and the ease with which we can be dismissed even when we are right, I don't think that we could also go to far the other way - cosying up to those who have msitreated CFS patients because they are currently in positions of power and authority, or pretending that there are not legitimate reasons for anger at the way CFS has been treated. I think that, particularly in the UK, we do need to be pushing for a break from the past, rather than just a gradual evoloution towards a more reasonable approach.

I certainly recognise that I could be totally wrong though - and the utter disinterest we've seen so far in the legitimate complaints made about Pace, along with a closing of ranks within the Lancet against patients makes me think I could be pushing for the unachievable here.