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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The nature of fatigue: comparison of postviral fatigue... (Wessely commentary)

Discussion in 'General ME/CFS News' started by oceanblue, Mar 22, 2012.

  1. biophile

    biophile Places I'd rather be.

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    I started writing a post about Wessely's recent reminiscence (http://jnnp.bmj.com/content/83/1/4.full) on the original paper (http://jnnp.bmj.com/content/52/8/940.full.pdf) earlier in the year when it first came out in January but never got around to posting ...

    The study was conducted in the late 1980's and no official CFS criteria was used in this study, instead Wessely sourced "cases of unexplained fatigue" (ie an absence of abnormalities on conventional neurological testing including muscle testing) from neurologists at a hospital for nervous diseases using an ad hoc criteria which seems remarkably similar to what the 1991 Oxford criteria would turn out to be, 6 months of unexplained fatigue as the primary complaint.

    The "striking" overlap of chronic fatigued patients with depressed patients compared to muscle disorder patients would be an unsurprising methodological artifact when considering that the vague criteria/symptom of fatigue has known overlap with depression and those with evidence of neurological and muscular abnormalities were actively excluded from the study. This would be like excluding anyone with elevated depression scores and then wondering why no one remaining meets the criteria for major depression. It is interesting that, as other have said, this study went on to form the Chalder Fatigue Scale without relevant questions for post-exertional symptoms.

    Perhaps because CFS patients aren't actually suffering at the core from what is labelled or diagnosed as depression? Then we also have the conclusion of Michielsen et al 2006: "In conclusion, an external attribution style does not protect the CFS or CFS+FM patients with a low self-esteem from depression." (http://www.ncbi.nlm.nih.gov/pubmed/16010445).

    Unfortunately other doctors are still overestimating the links with affective disorder 25 years later. Also, I have read the claim numerous times that Wessely discovered a neuroendocrine profile for CFS which differed from depression. I'm going to put a response to that in a separate post below so this post doesn't get too large.

    Ah yes, it just fitted into current "feelings"/prejudices of colleagues in the 1980's, that wonderfully enlightened decade in medicine and CFS, so all was well in the world. Especially when any patients with signs of organic dysfunction were actively excluded while patients with signs of depression were not. However, he may be partly correct in the sense that CFS may be more central than peripheral.

    If there was a proper control group to rule out deconditioning, then secondary to what exactly? (my guess of his perspective would be other cognitive behavioural factors?)

    The increased sense of effort is not unusual for anyone experiencing exhaustion, but does point towards something related being at the heart of the condition rather than the "sense of effort" itself being the problem to overcome.

    Wessely accepts CFS is a "real" disorder with symptoms "in the body" and has even explicitly stated that he does not think CFS is a psychiatric disorder. However, in his speculations the symptoms are "functional" (eg deconditioning and psychobehaviourally disturbed homeostasis) and the primary factors in perpetuation of symptoms and disability are indeed "all in the mind". Once you get past the veneer of pragmatism about supposed psychological factors in all medical conditions and the supposed laymens' conflation of "all in the mind" with imaginary/non-existent, it becomes clear that all the primary perpetuating factors in Wessely's model are mental (cognitive and behavioural).

    In the case of organic triggers, the assumption is that these cognitive behavioural factors are preventing the patient from natural recovery that occurs in everyone else. As the "pure mental disorder" interpretation of CFS is not accepted by most CFS researchers, Wessely (et al)'s views have now become the de facto psychological position rather than the reasonable grey area he makes it out to be.

    If current symptoms are bodily but perpetuating factors are primarily mental, this matches a classic definition of psycho>somatic illness. Yes, "psychosomatic medicine" is an multidisciplinary field which has moved on from simplistic Freudian arguments and includes mental health interactions with organic disease, but it is obvious that psychiatry plays a dominant role here and that many CFS-biopsychosocialists are psychiatrists or work in the field of mental health.

    Although Wessely often presents his work to certain audiences as an interest in the "biology" of CFS, he usually interprets the results in a psycho>somatic manner. Also note that there is little if any difference between treatment of MDD and CFS, both groups are usually presumed to have functional symptoms only, both are only offered CBT and GET and antidepressants.

    So the amateur philosophy of mind statements remain unchanged after 20 years. The distinction is not meaningless, especially for those who don't have a primary psychiatric illness. Ironically, ignoring the distinction under the guise of pragmatic biopsychosocialism has apparently resulted in similar "serious consequences" under Wessely's influence on the medical opinion of ME/CFS.
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  2. biophile

    biophile Places I'd rather be.

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    Wessely's supposed discovery of neuroendocrine differences between MDD vs CFS

    The current Simon Wessely article at Wikipedia (http://en.wikipedia.org/wiki/Simon_Wessely) credits him for the "discovery of an endocrine 'signature' for CFS that differed from depression [citation needed]". Citation needed basically means it is an assfact. Wikipedia has a long history of staunch resistance against referenced statements of criticism towards his work, but apparently it is OK to have unreferenced statements if they paint him in a positive light. However, Wessely's co-authored paper in question (Cleare et al 1995 - http://www.ncbi.nlm.nih.gov/pubmed/8550954) was NOT the first to "suggest" neuroendocrine differences between CFS and depression as Wessely himself stated.

    There are different methods for measuring HPA axis activity, but depression has a long history of association with the opposite of hypocortisolism: hypercortisolism. Research on cortisol levels in depression go back at least as far as the 1960's but much of that is difficult to access. Here are two studies published in 1976 which suggest hypercortisolism in depression, found during a quick search on PubMed (Carroll et al 1976 http://www.ncbi.nlm.nih.gov/pubmed/1005564 and Carroll et al 1976 http://www.ncbi.nlm.nih.gov/pubmed/935296). In the 1980's there was frequent discussion in the literature on the promising use of the dexamethasone suppression test as a diagnostic tool for depression, even the APA Task Force published a review on it in 1987 (http://www.ncbi.nlm.nih.gov/pubmed/3310667).

    Demitrack et al 1991 (http://www.ncbi.nlm.nih.gov/pubmed/1659582) was the first to report hypocortisolism in CFS. It could have been easily inferred from Demitrack et al's results at the time that there were distinct neuroendocrine differences between CFS and depression, but to be fair Wessely's study was probably the first to include a depression control group (CFS n=10, MDD n=15, HC n=25) and therefore found a controlled difference.

    However, Wessely later co-authored a 2001 review of studies on the subject (http://www.ncbi.nlm.nih.gov/pubmed/11722149), where contradictory evidence was found (including 2 studies which contradicted his CFS vs MDD study because cortisol was low in both groups) and hypocortisolism was only reported in 1/3 of studies and even then only 1/3 of patients so the vast majority of patients studied were not affected by hypocortisolism.

    Later reviews have suggested that it is more like 1/2 of studies depending on method but the "hypocortisolism" seen in CFS is more about a small statistical difference between groups rather than something that is determined in a single patient as abnormally low so it is useless as a routine diagnostic tool, although I wouldn't rule out some patients having more obvious hypocortisolism.. The same could be said for major depression and hypercortisolism, since such testing never became routine clinical practice as was anticipated in the 1980's?

    Perhaps ironically, Papadopoulos & Cleare 2011, recently discussed on another thread (http://forums.phoenixrising.me/show...-axis-dysfunction-in-chronic-fatigue-syndrome), goes as far as now claiming that depression can help to explain the hypocortisolism in CFS! (http://www.ncbi.nlm.nih.gov/pubmed/21946893) As others have said, the mild hypocortisolism in a minority of patients is relatively non-specific and heterogeneous. There's limited evidence of *normal* HPA axis function around onset and the role of mild hypocortisolism later in the course of illness is uncertain.

    EDIT: Hypocortisolism seems to predict a poorer "response" to CBT. At first I wondered if this is because hypocortisolism indirectly reflects an additional impairment which doesn't respond well to the sort of changes expected during CBT, then I realized that the placebo response has been associated with increased cortisol release (as well as increased release of serotonin, dopamine, and beta-endorphins), something which hypocortisolism due to HPA axis dysfunction may not be able to support.
  3. Snow Leopard

    Snow Leopard Senior Member

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    Thanks Biophile. I pretty much agree with your perspective on this 100%.
  4. Don Quichotte

    Don Quichotte Don Quichotte

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    I may be wrong, but my impression is that Wessley's motivation is truly wanting to help his patients. So, what made him reach such flawed conclusion, and even more than that why does he still cling to them, when one by one the foundations of those are being disproved?


    This, in my opinion, leads to another question, why are so many people in the modern world ready to accept that "positive thinking" or various mind-body manipulations, stress reduction etc. are going to be beneficial in the management of numerous diseases (including the "queen of all maladies"-cancer)?

    I think that the answer to both of those questions is: fear. Fear of the unknown, fear of loss of control. Fear of having similar symptoms. And the need to control this fear. This sense of control is achieved by attributing those ailments to what we can change and influence.
    If we believe that the root of many diseases that frighten all of us, is in our behavior and its modification, this means that it is up to us if we have (or do not have) such diseases.

    Wessley, like many other physicians taking care of patients with CFS (or similar diseases), felt the helplessness in being unable to control the course of those diseases, accompanied by the fear of having a similar disease himself.

    There were so many similarities between him and quite a few of those patients-ambitious, hard working, super-achievers. But, if this hard to understand disease was related to their behavior, then obviously he was protected from having something similar by behaving differently.

    If those people were just "not putting enough effort" into doing what they should and want, then he would not reach this state, because he will put enough effort. he will recognize the early signs of over-work and fatigue and will take appropriate measures, before he goes into the viscous cycle of abnormal patterns of behavior. His superior understanding of human nature and behavior will protect him from a similar fate.

    I trust him when he says that he truly believed his patient's suffering. Paradoxically, this scared him even more, and made him search for ways to be protected from a similar condition. The fact that he managed to do that (protect himself from a CFS like illness despite a life-style that puts him in a risk group) made him more and more convinced that it is his unique coping mechanisms that protect him from it. It was also what motivated him to provide his patients with similar coping mechanisms.

    understanding the nature of the sense of physical and mental effort, is not only at the "heart" of this condition, but also the way people living in the competitive modern world can "protect" themselves from this illness.

    If our patient requiring a wheelchair, is just "not putting enough effort" into walking, then we are at no risk of this happening to us. Whereas if this is some viral infection, or other physical dysfunction, we have no control over, it could happen to us one day...

    If a patient dies of cancer, because he/she wasn't "positive" enough, than this will not happen to us, because we will make sure we never have any "negative" thoughts. In fact if we always have only "positive" thoughts we may ensure our eternal health.

    http://www.humansideofcancer.com/chapter2/chapter.2.htm
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  5. alex3619

    alex3619 Senior Member

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    Hi Don Quichotte, I think its likely you are right that Wessely does believe he is helping, though he must have doubts by now even if he will not acknowledge them.

    I do not think its fear though. Fear will only kick in when he realizes that his entire life's work on this is down the drain. When will that happen? It might already have happened, or it might still be in the future and his doubt is growing year by year.

    I think its a problem with post-Freudian psychosomatic medicine. Its NOT science. Its a mutually reinforcing internally consistent belief system. Cults have similar thinking. Both have charismatic leaders. It has a very bad empirical/scientific/medical pedigree. It resists criticism from outside, and is so internally consistent its hard to see problems. Its also a dying branch of medicine, or at least it was some years ago. I have no clear evidence of the current status of psychosomatic medicine.

    The problem with the psychosomatic belief system is that so much of it is dogmatically accepted. Its then possible to rationally justify their conclusions based on their unsubstantiated premises. They then support their premises with conclusions drawn from their premises - circular reasoning. I need a lot more work on this before I am sure of my conclusions though.

    The criticism is coming from those who do not practice post-Freudian psychosomatic medicine. It is based on objective evidence and biomarkers that are now up to 92% specificity and 97% sensitivity if the reports I am reading and hearing are accurate and I am interpreting them correctly. Its only a matter of time before ME and possibly some types of CFS are regarded as substantially physical, if not entirely physical.

    I too have tremendous distrust about positive thinking. Its not a panacea, its a philosophy of life, and hence its an alternative religion in my view. It doesn't mean it doesn't have value but the claims are often hyperbolic - just as the post-Freudian claims from psychosomatic medicine about ME and CFS are hyperbolic and unsubstantiated.

    I think the problems stem more from issues like cognitive dissonance, failure to embrace crtical rationalism, failure to engage with biomedical findings and failure to adequately compensate for bias in their studies. Indeed, their research seems to maximize the risk of bias in some areas, a point I will be returning to in my blogs at some time.

    The failure to embrace critical rationalism includes a failure to design studies tha test their hypotheses. Indeed, based on the research approaches I have a working hypothesis that at a philosophical level they are practicing dogmatic verificationism. Proponents of dying scientific models do this (and so too do dying non-sciences I presume), although sometimes the models can be resurrected with good research.

    The apparent widespread use of misleading rhetoric is also disturbing to me. This is especially so for those terms with have multiple meanings and the proponents of the psychosomatic view of CFS then go on to use different meanings in different contexts. I have yet to form a conclusion about why this is being done, and indeed I suspect I will not be able to do so on the basis of current evidence without making unsubstantiable guesses - so the best I can do is say they are simply wrong.

    Bye, Alex
  6. Valentijn

    Valentijn Activity Level: 3

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    No idea about psychsomatic medicine, but a developmental psychology class I took 2-3 years ago only mentioned Freud's theories to contrast them with what is now believed. I think there was also a chapter going more in depth into Freud, but the instructor had us skip it entirely.

    They're talking like lawyers and politicians, not scientists. They are attempting to persuade, not to inform.
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  7. Esther12

    Esther12 Senior Member

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    He's a pragmatist, and fitting in with the beliefs of those in positions of power is a very 'functional' way to behave.

    @ Don Quichotte: I think you're right about the role fear and frustration played in shaping a lot of medical responses to CFS, and other 'medically unexplained symptoms'. With those like Wessely, who have been thinking about these matters for some time, I think that they may have only been triggering factors though, and there must be other more important perpetuating factors. Grey area between psychology and neurology, etc. (It's so tempting to talk about those I disagree with in this way. I can see why they're drawn in to it!)

    re:

    He seems to swap between recognising that CFS is likely to be all manner of different conditions, and then talking as if CFS should be researched as a singular condition, depending upon the point he wants to make. I don't think that there's anything at the heart of the condition, other than quackery.
  8. Enid

    Enid Senior Member

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    It looks as though SW is slowly catching on at our expense - years of misrepresentation especially here in the UK just might be put to right by the psycho lobbyists able to grasp medical/scientific findings.

    It's like standing by (I'm a 12 yearer) and watch him et al grow up. Interesting (well not at time) having been presented with a psychiatrist in Accident and Emergency I brought in my own Uni psychology to fight their all in the mind off - brain not mind you twit. No idea how I got home - all the Docs left. And to any psychiatrist looking in - this one said "you are the worst".

    And that is just a small part of the illness ME.
  9. biophile

    biophile Places I'd rather be.

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    I don't think Wessely is saying that ME/CFS patients are lazy because they have an increased sense of effort, he seems to be more into the "abnormal illness beliefs" perspective in general, where patients supposedly misinterpret symptoms and behave inappropriately as a result. It would be embarrassing to base a large proportion of one's career on the alleged distortions of patients' cognitions, only to find out in retirement that you were the one with cognitive distortions about those patients.

    It is also ironic that many people associate ME/CFS with laziness; many patients can tell you that the effort or will power required to get through a busy day as a healthy person pales in comparison to that required to get through a "lazy Sunday" as a patient.
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  10. Vitalic

    Vitalic Senior Member

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    If you point out the overwhelming evidence of physiological abnormalities to a CBT advocate they will tell you that this is not in any way inconsistent with their model of understanding, because a psychological illness cannot be differentiated from a physiological illness. What I want to know is if that is the case why are they not looking for genuine bio-medical evidence to back up their theory. Even if the clinical efficacy of CBT had been established to a far higher degree of confidence than it has to date, you cannot logically make the jump from this to then saying that the model it is derived from is true, and furthermore if the two types of illness are indistinguishable why is the focus of research into the two models so completely disparate. Surely given modern advances in neuroscience, if it were true that certain cognitions and thought patterns were the cause of adverse symptoms then neuro-imaging like fMRI would be a more worthwhile line of investigation than searching for "pre-morbid risk factors" with bias prone epidemiology studies. It appears to me that if they are not actually testing their hypothesis then the biopsychosocial model is unfalsifiable, and as Karl Popper said: in so far as a scientific statement speaks about reality, it must be falsifiable; and in so far as it is not falsifiable, it does not speak about reality.
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  11. Esther12

    Esther12 Senior Member

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    They're not interested in doing so, at least, not in a conventional way. They seem proud of their pragmatism, and that does not require them to be concerned about the truth or accuracy of their models - and they seem to be able to ignore the harm this does to patient in the utilitarian calculations required to justify their pragmatism.
  12. biophile

    biophile Places I'd rather be.

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    You made an interesting point, Vitalic, that if biopsychosocialists honestly believe there are close biological correlates to the supposedly-"functional" symptoms and allegedly-aberrant cognitions of ME/CFS, then why aren't they doing more to study them and use the knowledge to influence outcomes? Instead the assumption seems to be it doesn't matter what these are because they will be made redundant by (pragmatic) cognitive and behavioural changes. Lack of funding and expertise is probably another factor, it is easier and cheaper to issue questionnaires than high-resolution fMRI etc. Most components of their hypothesis are technically testable on some level, but I'm not sure where it all fits in terms of falsifiability.

    I think the epidemiological studies for pre-morbid risk factors can be useful, but unfortunately as you said they are bias prone. Most (if not all) of the studies presented to us as evidence that stress and depression significantly increase risk of CFS were either retrospective and/or without adequate medical evaluation and/or used dubious CFS criteria, so the evidence is shaky at best. Wessely himself has shown recent signs he has little faith in retrospective studies, but apparently he takes no issue promoting research that doesn't properly evaluate participants.

    Although in general not all physical symptoms are necessarily organic and the distinction between mind and body is not black and white, I have trouble believing that biopsychosocialists are so stupid as to believe there is no actual distinction between, as Wessely worded it, "physical or psychological aetiology" (other similar examples elsewhere include physical vs mental illness, and organic vs psychiatric). Would they seriously tell that to all their patients who present with organic disease and psychopathology? Rather I think they are making sloppy pseudo-pragmatic statements about the mind-body problem and psyche-soma connection in CFS. These people are clinicians and researchers, not philosophers.
  13. Snow Leopard

    Snow Leopard Senior Member

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    A key point about the biopsychosocial paradigm is that it removes the directionality involved. It implies that there are no shortcuts for guessing chains of causation and directionality between symptoms and specific disease markers. Taking depression as an example, you can't say, (a) this person is suffering from depressive symptoms, (b) depression is associated with stress and social isolation, therefore (c) this person is suffering from stress or social isolation. This is because there may be many other triggering factors for depression, from bad diet to viruses to genetic polymorphisms.

    The paradigm is meant to open up the possibilities in terms of treatments, rather than a narrow focus.

    Of course practise appears to be different from principle. It would be great if Wessely practised what he preached.
  14. alex3619

    alex3619 Senior Member

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    This BPS/faulty belief view of CFS has its origins in Freudian theories of hysteria. Popper was distinctly anti-Freud, and though that such beliefs were non-science. He started attacking them in the 50s I think, though I am not sure about that. It is entirely probable that there are discrete biomarker correlates for those who benefit from CBT and GET, and further biomarkers for those who do not benefit, and yet more biomarkers for those who get worse. It has been loosely inferred that low cortisol predicts a bad response, but most of us have low cortisol. It would make much more sense for advocates of CBT and GET to develop and research biomarkers to break down patient groups into subsets. They seem however to be very resistant to the idea - they want to treat all ideopathic fatigue as the same thing, which is so very absurd its completely irrational. Now if they said its an hypothesis and treated it as unproven that would be one thing. They however want to treat it as though it were conclusively proven, and so hype it everywhere and advocate it as the number one choice in treatments.

    I agree with biophile in post 32 that neurological testing including fMRI would be one way to go. Given Komaroff's success with spectral coherance EEG, I think that might be another. I cannot see why they would not do this if they were serious about research - the only thing that makes sense to me, and I admit my imagination might be limited on this, is that they are worried they will disprove their own model to some extent. Indeed I think there is already evidence of this. The PACE trial, to me, was an unmitigated failure. It reminds me of the saying "With friends like these, who needs enemies?". With treatments like these ...

    I will not discuss conspiracy theories in relation to this, but I am mindful of some of them and I am looking for clear evidence, which so far is lacking. This does not mean I don't think unethical things are happening, its that it will take a lot of work to identify and demonstrate them.

    Bye, Alex
  15. Enid

    Enid Senior Member

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    Do you think that any of this lot will ever get involved with real medicine/scientific findings. ? (rhetoric - hardly specialists in the findings of biomedical research they choose to ignore or bend to their ignorance).

    How vague can you get with "fatigue" - passing out, unable to think or move limbs,unable to breath (let alone speak or swallow), locked in a half world, (clinical you b..... idiots). S.... them all for their for any suggestion of their self inflected depressions. They are chasing moonbeams and brought much extra suffering whilst they poddle their ideas to suit their egos.

    Historically psychiatry has not been a respected medical profession and will remain unrespected and distrusted until real science/findings take their place.
  16. biophile

    biophile Places I'd rather be.

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    Burning ears?

    Saw this on the other forum today (http://www.mecfsforums.com/index.php/topic,11924.0.html) ...

    Will be interesting to see how the results are "interpreted" if the new data challenges another pillar of the cognitive behavioural model (like actigraphy did for the presumed role of CBT in increasing activity). The best we can hope for from Nijmegen is that the blanket application of CBT will be replaced with a focus on a subgroup of patients.
  17. Esther12

    Esther12 Senior Member

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    I was just reading the original paper Wessely was looking back upon, and this paragraph stood out:

    Funny to think that he was promoting this story right in his first paper: 'if only CFS patients would be open to the wonderful psychological treatment available to them'... still lacking evidence for these effective treatments though.
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  18. alex3619

    alex3619 Senior Member

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    I have written on this point repeatedly. It kind of obvious to me. Biophysical symptoms imply biomarker and biomedical pathology even if they claim the cause is mental. By then ignoring the physical they are retreating into esoteric philosophy, not science.

    By the way, I now think that Popper started fighting Freudian babble back in 1922. That's almost a century ago.
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