Is chronic pain a disease in its own right?

I recently received an email from Vanessa Milne who is doing Post Graduate Studies in Pain Science at University of Sydney with the who’s who of Australian pain stuff – Nicholas, Cousins, Siddall, Keast…. an impressive line up that.   Anyway, Professor Michael Cousins is leading the way in an impressive and ambitious attempt to put pain on the Australian National Agenda. The cause is The National Pain Strategy and the organisation is painAustralia.  Now, I reckon this is a great thing and I think Prof Cousins is doing a superlative job. However, I am not quite on board for one of the driving messages of that campaign – that Chronic pain is a disease in its own right. I think they have got this wrong.  I am definitely sympathetic to the sentiment – that there are processes that drive chronic pain and that these processes are not truly damaging in the peripheral body-part kind of way (although see this paper by Hancock et al and our blog on it).  Rather, they are changes in structure and function of the nervous system and function (at least) of other efferent systems – endocrine, autonomic etc etc).

My conceptual problem with the idea that these changes are evidence that chronic pain is a disease in its own right is that I don’t think these changes are pain. I think they contribute to pain. I think they are not sufficient to cause pain because if they were, people with chronic pain would never, ever be pain free – not even for a millisecond – and they would never sleep – not even for a millisecond (or can one sleep in pain? I think the answer to that question is ‘almost never’ – that it is very rare to have pain in your sleep – but that is another question altogether). Moreover, everyone with a spinal cord injury would have pain and everyone with a peripheral nerve injury would have pain, because both these situations lead to CNS changes.

Here is the rub – if we are to accept that ACUTE pain is an output that emerges into consciousness when the brain evaluates a body part to be in danger, then I think we must also accept that CHRONIC pain is an output that emerges into consciousness when the brain evaluates a body part to be in danger.  I contend that the ‘disease’ actually refers to the contributors to the brain’s evaluation, not the result of the evaluation.  So, I reckon that pain is the protective conscious bit that manifests from the ‘disease’. Is this just a semantic issue that we should let lie? I don’t think so, mainly because I think it actually helps propagate the myth that pain is something that exists in the body – that it is an entity in itself. This is, in my view, a problematic myth for several reasons. For example, if pain does in fact exist as an entity in itself, then we should be able to detect it, somehow, some time, when technology permits perhaps.  Saying that back pain actually exists in the disc is now sufficiently uncool to be poopoo’d in most circles, but is it all that different to say back pain exists in the dorsal horn of the spinal cord, or in the network of neurons we have come to call, with bravado I might add, the ‘pain matrix’, or in the glial cells that interact with neurones in devastatingly complex ways?

So, while I think the Australian National Pain Strategy is excellent, and while I have the utmost respect for the people driving it and wish to give it my wholehearted support, I don’t think that we are helping to reconceptualise the truly multifactorial, truly biopsychosocial nature of pain, its fundamentally emergent property, the fact that it is a conscious experience, by shifting the culprit tissue from the periphery to the CNS. I do think we should be embracing the contribution to chronic pain of structural and functional changes within our CNS and elsewhere, but to call these pain seems, to me, to be a failure of reasoning.  It reminds me a little of my favourite quote from Prof Pat Wall – ‘the mislabeling of nociceptors as pain fibres was not an elegant simplification but a most unfortunate trivialisation’.  One might paraphrase that here: ‘the mislabeling of central sensitisation, cortical reorganisation, neuroimmune dysregulation, SNS upregulation and grey matter loss as pain is not an elegant simplification but a most unfortunate trivialisation.’

About Lorimer Moseley

Lorimer is NHMRC Senior Research Fellow with twenty years clinical experience working with people in pain. After spending some time as a Nuffield Medical Research Fellow at Oxford University he returned to Australia in 2009 to take up an NHMRC Senior Research Fellowship at Neuroscience Research Australia (NeuRA). In 2011, he was appointed Professor of Clinical Neurosciences & the Inaugural Chair in Physiotherapy at the University of South Australia, Adelaide. He runs the Body in Mind research groups. He is the only Clinical Scientist to have knocked over a water tank tower in Outback Australia.

Link to Lorimer’s published research here. Downloadable PDFs here.

Reference

ResearchBlogging.org Hancock MJ, Maher CG, Laslett M, Hay E, & Koes B (2011). Discussion paper: what happened to the ‘bio’ in the bio-psycho-social model of low back pain? European spine journal PMID: 21706216

Comments

  1. Fascinating post. It’s interesting that some chronic pain syndromes have been able to have been given a name, simply because they produce a recognisable cluster of symptoms (some of which can be measured, even if rather clumsily). I am thinking particularly of vulvodynia, which is my professional obsession. Vulvodynia patients have all the hallmarks of any other chronic pain situation – central sensitisation, autonomic changes, multi-systemic changes. On the one hand I think that naming this as a disease can detract from treating the multifactorial nature of pain (JUST FIND THE RIGHT DRUG THAT WORKS!). On the other hand I think that seeing this as a cluster of symptoms that define it as a chronic pain syndrome can detract from identifying the underlying feeders into the condition, such as chronic/recurrent vulvovaginal candidiasis or even vaginismus (especially where it preceded the vulvodynia symptoms). It’s a difficult tightrope to walk, and I’d love to be in conversation with anyone else working closely with this ”syndrome” on a day-to-day basis.

  2. andreiokas says

    “people with chronic pain would never, ever be pain free – not even for a millisecond”

    I have had chronic pain for 10 years and I was NEVER pain free! Even when I am completely still, I’m in pain… When I am dreaming, I am in pain in the dream; I wake up screaming in pain; I’m only able to sleep when I am absolutely exhausted, because of the pain. If you never had chronic pain, don’t talk about it, as it hurts people who suffer from it every single day!
    If chronic pain was considered a disease in its own right, people would had more respect for it, so it would be good for us!

  3. Hi Lorimer, thanks for your response.

    In your second paragraph you state…”My conceptual problem with the idea that these changes are evidence that chronic pain is a disease in its own right is that I don’t think these changes are pain. I think they contribute to pain. I think they are not sufficient to cause pain because if they were, people with chronic pain would never, ever be pain free – not even for a millisecond – and they would never sleep – not even for a millisecond”.

    I can tell you that I am never pain free. I have pain in my sleep all the time. My dreams are filled with pain. This pain is both real (an extension of the pain I have during the day) and imagined.

    But I have always slept relatively well.

    So I would suggest from experience that just like other neural pathways, chronic pain can be suppressed but not necessarily eliminated by sleep.

    You consider it problematic to consider “pain” to be an “entity”. But do you consider learning or specific memories to be entities? They exist in the nervous system don’t they? They are tangible pathways and activating them leads to very real actions and interactions. Furthermore, if you injure certain parts of the brain these…allow me to call them entities…are damaged or lost.

    What are they if they are not entities?

    I see pain as a similar entity. And in the case of chronic pain, particularly when the nociceptive stimuli has resolved, it seems logical to view it as a pathology of the PNS, CNS, or maybe even both.

  4. This comment from Daniel is really important. It sounds to me as though Daniel has received this message exactly as Prof Cousins would hope. I respond to Daniel here really only to highlight the importance of what you have said. Thanks Daniel.

  5. Peter Andersson says

    “the mislabeling of nociceptors as pain fibres was not an elegant simplification but a most unfortunate trivialisation”

    What a brilliant statement!

  6. I have had chronic pain in my legs since I was a teenager and rely on a wheelchair for mobility.

    I am not a patient of Professor Cousins or A/Professor Siddall but I can say that their theory of chronic pain as a disease in its own right was the only theory in medicine that ever made any sense to me. I spent years going to various doctors who looked for pathology with x-rays, blood tests, MRI imaging, or through simple conversation in the case of psychiatrists or psychologists. None of this was productive or provided any evidence based explanation in my opinion (although I’m sure the psychiatrists would disagree as you can rely on them to find pathology in everyone).

    However reading Professor Cousins work in the literature was a revelation to me and source of my greatest healing. It explained to me that the intense pain that significantly impaired my activity was not a symptom but the actual problem. It was an incorrect message in my nervous system, the disease itself and not the symptom. I could accept this and start moving on with life, and life’s been great ever since.

    Pain as a disease articulated everything about my experience and gave me hope that people like Professor Cousins were actually on the right track. Everything in my life experience corresponds with this theory, a developing theory that I am confident will be repeatedly validated as science reveals more about the human nervous system.

  7. First, a very big thank you to all of you who have taken the time to contribute to this interesting discussion. Second, make sure you look at Michael Cousins’ post, which is two recent to this – I would have commented there but there is a different focus to those comments, which are in my view more than a bit ‘off topic’. It seems to me that there are several very legitimate and important perspectives here – one thing I love about this conversation is that pretty much everyone concedes that it is a murky truth we are trying to find. Actually, it feels to me that the frame of reference is the thing that differs between the three main arguments – on the one hand is the outcome-driven, ends justifies the means argument. Michael Cousins emphasises this argument by illustrating what has already been achieved and it truly is impressive. He urges us to see what is at stake here – the ‘disease’ label seems to have got considerable traction with governments here in Australia and abroad. Surely this is a good thing – that attention is being given in the form of funding is clearly evidence that a message is getting through. This argument would seem the most beneficial for those of us trying to reduce the burden of pain on the community.
    On another hand (I have just realised that this is a four-handed situation – bear with me) is the scientific accuracy argument – that the disease label simply doesn’t fit, that pain is emergent and that it may be the result of a disease-like process but to call the pain itself the disease is a fracture of logic. To this argument, the outcome is immaterial. The end is never justification for the means and to jump on board the ‘disease’ train is akin to cheating. This would seem to me to be a more pure perspective because it does not require us to find a line over which we must travel in order to accept the reasoning flaw because the spoils are rich.
    The third hand seems to accept the reasoning flaw and dismiss it as an issue for the intellectual elite that is little more than semantics. This is a really important hand to be played because there is no doubt that semantic and pedantic arguments can stand in the way of progress. Phil Siddall suggests that this focus on what pain and disease really are is very healthy but has a time and place – that patients do not understand the idea of emergence or aporia. He has a very good point here because for me, aporia was, until reading his entry, a good name for something without pores. The whispering at the back of my mind here however, is Pat Wall’s classic remarks about the mislabelling of nociceptors as pain fibres – not an elegant simplification but a most unfortunate trivialisation. We should be wary of simplification at the expense of accuracy lest it comes back to bite us later on, as the pain fibre/pain receptor issue clearly has.
    The final hand is from the perspective of people in pain. This argument richly deserves its time alongside the perspectives of the political lobbiest, the ivory-towered ethicist and the considered pragmatist, because it reveals an interesting complexity with which those of us in the first three groups will almost certainly need to engage. Is it possible that, once we get some serious big-time funding (the funding this problem clearly deserves) and we reconceptualise pain to be a disease in its own right, that we will make it all that more difficult for people to overcome the problem? Several of you have spoken to this possibility – themes such as disease seems dangerous, disease seems permanent, disease shifts the pain from an entity that exists in the broken tissues to an entity that exists in the central nervous system.
    Within its frame of reference, each argument seems very compelling. As a clinical scientist, the truth doesn’t seem all that murky at all to me – pain is not a disease. Period. As someone always looking for money to find better solutions to the problem of chronic pain, and seeing 2% of research funding head towards a problem that consumes 25% of medical dollars (those numbers are about right), in floats the murkiness like fog on a winter’s night. As someone who truly thinks people in chronic pain are part of the misunderstood, outcast and oppressed of the health care system, the fog thickens and the truth seems to be obscured by, as Michael Cousins says, what is at stake here. So, do we vote on party grounds? Do we swallow the pill of pragmatism and go for the money? Or do we cross the floor and vote on principle, running the chance of being ejected from the party and sending the quest for better recognition of the plight of pain sufferers back to the dark ages? Not to imply that one humble blog and its writers will make much of a dent on national and international policy, but to illustrate what I feel is a vexing issue. Thanks again to all of you who have contributed here – the manner of the discussion has been respectful, astute and of the highest calibre. A particular thanks to Prof Cousins and A/Prof Siddall for taking the time to venture into the blogosphere. It is an important conversation to have.

  8. I was alerted to the fact that this discussion is going on and as co-author of the “pain as a disease entity” paper looked up the blog with interest. It is not the first time of course the concept has been questioned – in fact in our on-line postgraduate coursework degree program in pain management at Sydney University, one of the major on-line activities for the students is to debate the merits of this idea – half are allocated to the “pain is a disease” side and half are allocated to the “pain is not a disease” side. It is always a good debate with interesting ideas thrown out on both sides.

    So I am not surprised that Lorimer’s post has generated some vigorous discussion. For those of us in the pain world it raises the age old question of “what is pain” as well as trying to address the other issue of “what is a disease” and then put them both together.

    I can’t address all the interesting points raised but I will make a more general point and propose that no matter how we conceptualise pain (and we wrestle with that), I think the audience we are speaking to or writing to affects what we say. For example, there are many philosophical views or labels for pain that we use such as pain as an “aporia” or “emergent property’. While that it is an interesting discussion that may challenge and inform us as pain clinicians and researchers, in the context of people with pain, I am not sure that they relate so well to this type of language.

    So I think there is a place for conceptualising pain in a way that communicates to those outside the pain community. Pain as a disease is not a sophisticated idea or concept and there are aspects of the concept that can be debated. However, it aims to capture the idea that pain is much more than a sensory signal, that pain is accompanied by a whole host of pathophysiological, psychological and social changes from abnormal ion channel expression in primary afferents through to neuroplastic changes in the brain through to social disruption – as we all know, far too numerous to mention.

    While these are obvious and well known to us and we can debate the finer points of cause and effect and what actually is “pain”, I suggest that there is a place for giving people such as policy makers and our colleagues in other professions a conceptualisation that takes them forward to see pain in a different light. That may sound very pragmatic and I am certainly not suggesting that we as a pain community don’t continue to wrestle with this thing called pain that we research and treat and teach about. As in our own course, we encourage the debate. But I suspect that there are still those out there for whom it is helpful to get the simple message that pain is a lot more than a symptom.

  9. Sandy Hilton says

    From a PT perspective I think that branding chronic/persistent pain as a disease in order to make it more visible and accepted by political or insurance powers is unhelpful. The physiology does not vary according to political trends, and insurance is a business designed to earn money for the owners and shareholders. At least in the States, they like saying NO. Calling pain a disease to get the attention of politicians or secondary payers at the expense of accuracy does not help my patients in the long run.

    Attempting to simplify the concept of pain as a complex output of the mind/brain is a worthy endeavor. Calling pain a disease adds layers of contextual interpretation of permanence and hopelessness, this does not make my job easier. It may be that this is one example of how persistent pelvic pain is easier than most orthopedic disorders (degenerative disc disease?). I spend most days teaching my patients about neurology and immune responses in persistent pain states, they do understand.
    It is possible that because of the immediacy of pain with sex or with sitting that my patients pay very close attention to what I say. They understand that they can be pain free one second and experience sharp, stabbing pain the next – when all that has changed is a thought. They get it, and once they understand how thoughts can evoke a pain response, they also get how they can change it.
    What disease changes with a thought?

    Neil O'Connell Reply:

    Just to be awkward, and a bit off topic, one might suggest that the physiology must change in response to political trends. If we take the view that the majority of reported pain is a real experience for the sufferer, then the huge 20th century epidemic in disabling low back pain, or the varying prevalence of long term problems post whiplash between countries with different health and insurance systems, or the rise and fall of Australian “RSI” in the 1980’s-90’s suggests a clear adaptation to the political scene.

    On the pain relief as a human right theme I too have reservations. It first implies that we have effective treatments, and for chronic pain we are definitely struggling. The side effect of such a policy is “more treatment more treatment” but that implies that treatment is always a positive step. It is a very good policy for researchers, therapists, and the medical industry but it is a truism that in healthcare something is not always better than nothing and also that what’s good for the industry might not necessarily be good for patients. There is some compelling population-based data out of Canada that with varying approaches to care, after controlling for a whole host of variables that might otherwise explain such a finding, more treatment for whiplash is a predictor of poor outcome.

    But I digress. I too don’t like the disease distinction. We simply don’t know enough to collect a bunch of correlates and call them a disease process. We are definitely at the model building stage.

    Gregory Reply:

    From an objective stand point I don’t like the Chronic Pain Syndrome diagnosis yet from a practical in vivo perspective dealing with anything from political legal regulations to pharmacies it is a very useful diagnosis in getting patients who experience chronic pain to avoid stigma and increase the likelihood they recieve treatment they deserve as a fundamental human right. Chronic Pain ultimately is a cluster of symptoms of underlying physiological conditions which should be verified in each case with objective measures. A biopsychosocial approach to chronic pain currently is needed at least intermittently until the diagnostic testing is more available to all socioeconomic classes and more biological research is completed into the biological markers of “chronic pain”.

    David Fitzgerald Reply:

    Neil
    I can’t but agree on your conclusions regarding epidemics of fashionable diseases which do appear to have a socio-political dimension and attract a plethora of (mostly) well intentioned care providers.
    However, I can’t help thinking of parallel’s in other aspect’s of healthcare that do not appear to have created such a quagmire ie cholesterol screening in cardiac disease prevention, mammogram’s / smear’s in women’s health, oral hygiene in dentistry etc.
    We do not seem to find it necessary to search for complex neurobiological/biopsychosocial explanatory mechanisms to direct care in these senario’s.
    Is there something about the definitive specificity of diagnosis that set’s these examples apart or conversely is there something about the non-specificity of LBP & Whiplash that lends itself to such complex scrutiny and uncertainty?

    I have no issue embracing a multi-faceted treatment approach but have a lurking unease that this should be a “given” in spinal pain and hardly ever mentioned with peripheral dysfunction – yet an obvious clinical necessity when evident.

    At the risk of sounding somewhat Cartesian I wonder if there is more to go in spinal diagnostic exploration or should we abandon in search of greener neurobiological fields?

    David

    Neil O'Connell Reply:

    Good questions – dunno! I think mammogram etc is different since it is used to detect an underlying pathology of which the patient is unaware, whereas pain comes first from patients self report. Also the state of knowledge is much more definitive with regards malignancies than it is for most chronic pain states (although population scerring with mammography is not without controversy: http://www.bbc.co.uk/news/health-15444879).

    As for whether we should continue to look for a structural diagnosis in chronic spinal pain, I simnply don’t know. I suspect there must be peripheral drivers contributing in most cases but I am not sure that identying them willnecessarily be that fruitful. But would love to stand corrected.

    Sam Towers Reply:

    This is a fascinating discussion. It would appear necessary to find the right terminology at this point in time to shift the common ‘pain as a symptom’ perception to an understanding of chronic pain as a dynamic multi-faceted condition which causes great suffering in many people, for the simple reason to ensure people with chronic pain which significantly impacts on quality of life and function can access the help they require if they choose to do so. Otherwise ,as was mentioned earlier, pain will be continued to be seen as merely a ‘symptom’ of other conditions and will not get the attention, funding and political recognition it deserves. ‘Disease’ as a term to describe chronic pain is likely to be unhelpful and merely create a label such as ‘fibromyalgia’. To refer to it as a ‘disease’ seems to create a sense of fear and helplessness , an irreversible progressive incurable process requiring unimodal treatment and a search for a ‘cure’. Some reference was made earlier to depression and anxiety , would we consider these as disease states or conditions?. Could they not also be described as ‘emergent properties’ of complex relationships between neurobiological mechanisms, social and environmental influences, psychological processes and personality traits. One person may consider their depressive disposition as a personality trait and it may not create the ‘suffering’ that is attributed to it by another who considers their depression to be a disease or a condition.
    The combined subjective and objective aspects of pain fluctuate, resolve, progressively worsen, have variable impact at different times on individual lives and therefore make pain particularly difficult to define. Nevertheless political and societal recognition of how pain in its own right can impact on people’s quality of life and functional capacity and on society and the economy at large is perhaps where the focus needs to be maintained whether it is defined as a ‘disease’ an ‘emergent property’ or a ‘condition’.

  10. Thanks everyone for the interesting discussion. As a ‘person in pain’ with no scientific background whatsoever I had previously come across the Pain Australia website. I did take away the message at the time that chronic pain was a disease in its own right. My response was discomfort as this description didn’t sit well with the understanding of pain I had constructed from my health practitioner and the book she encouraged me to read. Also for me, personally, the word ‘disease’ carried with it connotations of danger, putting my experience in neon lights and amplifying it as something to be feared. I had no wish to sensitise my system further and decided to discontinue reading the site. I am pleased about the activity being generated by Pain Australia to help those with chronic pain but I prefer accuracy and detail from my health professionals.

  11. Selena, I’ m with you.

    Semantics shmantics, I’m adopting a postmodern approach to the term disease anyway. Who says “disease” can’t be a multifactorial, biopsychosocial and a conscious experience? I practice in a mental health setting so I am biased anyway – try and validate some of the terminology that gets thrown about there. Brains.

    Perhaps we should follow IT’s lead and come up with some new terminology
    think of an alternative to “disease” then…

    The complexity of pain and its perception/experience should be broadcast to the masses – get pain on the Australian National Agenda, educate clinicians in all that’s been said here and address suffering.

    An aside – that patient in chronic pain – its likely that at some stage that’s going to be you and me, not the “other”- prepare for some navel gazing.

    David Fitzgerald Reply:

    Bert
    on the theme of switching to IT terminology how about TWAIN (socket commonly found on the back of a PC). Apparently it stands for “Technology Without An Interesting Name”

    Quite apt I think!

    David

    Blaise Reply:

    Bert – excellent idea, even if the swim will be upstream!

    Selena, Prof Cousins has been putting forward his idea in the media for some time (such as here in Australia: http://www.abc.net.au/catalyst/stories/2621515.htm and in Canada: http://www.theglobeandmail.com/life/health/efforts-to-battle-chronic-pain-found-lacking/article1694602/), and I seem to remember he took the proposal to the IASP conference in Montreal, which explains the latter article.

    I thought his ‘take home’ message of the site was fairly clear from the series of pages starting with “What is Pain?” – http://www.painaustralia.org.au/general/what-is-pain.html.
    But maybe that’s me projecting onto what he’s writing.

  12. I didn’t read all the information at the Pain Australia site. I didn’t get the impression that chronic pain = disease as the take home message. The impression I have is Australia isn’t able to serve the needs of its people with pain adequately. The health care system is failing to address this particular population. The bullet points seemed to highlight inadequate access to care, poor timeliness of care and medical professionals actually potentially ignoring those who do have pain (for whatever reason). So… in my opinion, the strategy seems more in line with creating awareness, addressing complaints of pain adequately, improving quality of life and potentially reducing health care costs and the burden this population has on Australian society.
    With respect to the chronic pain = disease issue, well, you might be focused on “science” versus contemplating the political agenda. Tagging chronic pain as “disease” might help the various medical providers to take notice and address the issue. In other words, using the term “disease” might increase the likelihood of physicians offering a course of action to those who do have chronic pain. “Disease” creates the impression that some course of action should happen and there are probably some management options to consider.

    Judy Reply:

    Right on!

  13. Dr Mick Thacker says

    I think this is one of the most stimulating discussions I have been involved in for a while and has got my creative juices flowing. I have just re-read Lorimer’s original blog where he states that the classical perspective is that pain in the body is thought to be an entity in itself. One of the key challenges here is the fact that patients report and “feel” their pain somewhere in the body. Our cultural upbringing reinforced by our education(sadly) makes us associate this with something wrong in that part of the body – but what we are really dealing with is embodiment. The construction of pain is usually referenced to a part of the body – most likely the site where the individual first perceived being injured but not always! Now the difficulty arises as “embodiment errors” (better described as disembodiment) occur frequently as part of brain processing and have been linked to various symptoms that are classically described for many conditions. Elsewhere, Lorimer has suggested that pain may be illusory – illusions are a key manifestation of “embodiment errors” and this may represent a useful strategy for investigating/understanding pain states.
    I know some of you who say “but we are clinicians and this is all too much for our patients” but traditional views have led to the situation where we wrongly ascribe pain to tissues and as a stand alone entity/disease which have not proved, so far, to be helpful in tackling the huge problem of clinical pain and are unlikely to suddenly make a significant impact any time soon!

    alison lingwood Reply:

    Hi Mick,
    Yes, as clinicians we must embrace these ideas, our clients will ‘try ‘ anything if we explain it to them in the right language so it makes sense to their belief systems. If we experience a headache it could be because we are worried /stressed about something. This is acceptable to current thinking. If thoracic pain is experienced and the client describes it as ‘a stab in the back,” then perhaps it is ? Ask, investigate. Why do they need to protect themselves and keep this pain ? After all we are just us humans are just trying to survive the best we know how !
    Try it patients love it.

    David Fitzgerald Reply:

    Mick – that’s the power of Web 2.0. On a similar theme of stimulating conversation Heidi Allen (of BiM fame) recenlty published a fascinating discussion here.
    http://heidiallen.id.au/2011/11/michael-nielsen-open-science-ted-talk/

    It’s from the wonderful TED site and discusses the benefits of “Open Science” regarding information exchange. Needless to say – many challenges to conventional thinking but we’re in the right place for that!

    Wish I could contribute more on the philosophical discussion but it’s over my head -I ll have to read Geoff’s PhD too.

    David

  14. I have to say I’m extremely impressed – to be able to hang in philosophical and biological discussions is not easy. I’ve recently completed a mixed-methods study forcing me to dabble in epistemology and ontology and it nearly killed me! As difficult as it was to read neurobiology, epidemiology and phenomenology/constructivism, it was an extremely valuable learning experience. As painful as it can be, reflecting on one’s epistemology and ontology and how they inform practice/research is a valuable exercise.
    I am willing to bet you are the only existentophenomenologioneurobiologophysiotherapist in the world – try getting that on your business card!
    Geoff

    Blaise Reply:

    Geoff,
    Is your study published? It sounds tanatlisingly interesting.
    Regards
    Blaise

    Geoff Reply:

    Hi Blaise,

    Thanks for your interest. Working on writing up revisions as we speak. This study was part of my PhD work so I intend to send it to BiM. If you like, send me an e-mail (bostick@ualberta.ca) and I’ll be sure to send you the link when it is published.

    Geoff

  15. An excellent discussion, thank you Lorrimer.
    I hope my comments will actually contribute, but I’m having difficulties deciding whether or not I agree with the concept of classifying chronic pain as a disease in its own right, so I hope this doesn’t turn into nonsensical rambling. (And having read the previous comments it makes it even more difficult to decide!)

    My interest in pain has comes from a neurological rehabiltation background, and I have come to conceptualise persistent pain problems – thanks to such researchers as have contributed above – as a problem of maladaptive (even aberrant?) plasticity. And I strive to remind myself that, although there are clear neuroplastic changes, multisystem plasticity is involved (as Lorrimer alludes to.) Thus, if we are on the topic of philosophical constructs, perhaps we have to admit that the way we are (mostly) taught in healthcare contributes to the perpetuation of presenting complaints like persistent pain are “diseases to be cured”. We learn body systems as discrete entities (and sometimes label ourselves as such in our specialties; a neurologist; a musculoskeletal physiotherapist etc.). It may not contribute anything new to state that persistent pain does not fit neatly into the reductionist biomedical model or an A+B=C disease process, but this discussion sure reinforces it for me.

    So where does it fit? To me it’s like an amalgam of a perceptual deficit and a neurobehavioural manifestation of a precipitating disease process. So there is an element that is rather like one that might manifest itself post-stroke (apraxia, pusher syndrome, auditory hallucinations as examples). Neurobehavioural manifestations? That is a difficult one to bandy about, but those who have worked with people with Multiple Sclerosis, Parkinson’s Disease or Huntingon’s Disease know there can be florid neurobehavioural manifestations with an underlying disease process. Then again, neurobehavioural manifestations do not have to be so obvious – such as you might come across in anxiety or post-traumatic stress disorders. To me, this fits better into concept pain as an output after the brain has evaluated the input and assigned a danger value (irrespective of actual tissue damage), because you can have a dysfunction of perception and a neurobehavioural manifestation coexisting.

    So in that case, one might argue that persisent pain is a disease. But I’m unsure if that is either correct or helpful. “Emergent property” may be hard to explain to the person experiencing persistent pain, especially for the busy clinician, so I can agree with some of the contributors above in that respect. (On the other hand, as Lorrimer’s research has shown in the past, explaining complex concepts to patients expereincing pain is not only possible, but helpful.) But labelling it as a disease? I really think that is more likely to contribute to the ‘problem’; and is it not retrogressive?

    Well, not as coherent as I’d hoped. Feel free to correct me / pick it apart. My problem is, I’m not sure if my evaluation is anything close to correct! (Hence, I have enrolled on the University of Sydney pain managment MSc…interesting times ahead for me, I think – I’m sure this kind of debate will be part of the course!) It will be an interesting time in Australia, considering that the Disability Support Pension law changes in January 2012 – within its guidelines pain is not considered a diagnosis in itself, but a symptom.

  16. Just met with our local Pain Clinic Consultant and he said here in UK that the medical profession had a taken a retrograde step in last 10 years when dealing with chroncic pain. Interesting to hear this from the top dogs who see these patients ! They had no funding now for a clinical psychologist and were expected to inject and medicate. Luckily, he thought differently but it is an uphill battle. Why not foget pain as that is not the objective measure we are trying to change but the current beliefs and worries or those inherited/genetic philosophical ones we aquire ? Akin to treating the foot when there is a huge disc bulge pressing on S1 !!!

  17. Aoibhean Martin says

    The idea of “pain as a disease entity” may have enough emotive shock value to jolt people (clinicians and the public) out of their old ways of thinking of pain as “symptom”.

    So I think the main benefit of giving pain a “disease entity” label is the potential to have chronic pain taken seriously, as a state that needs to be specifically managed in and of itself. In my view, this benefit probably outweighs the “philosophical clunky-ness” or semantic imprecision of the definition.

    In a clinical setting, I can make use of the concept that “your pain is a disease/problem in and of itself, it is not a symptom of something else. (It is your pain we need to manage; not your ?misaligned pelvis/?disc herniation/?insert useless explanatory model here.)”

    In agreement with Keith, I’m not entirely sure that deeper philosophical discussion of pain as an “emergent property” is workable in most clinical settings. (At least given how most people conceptualize pain currently)

    Probably for most busy healthcare professionals, the (possibly emotionally/ cognitively jarring) idea “chronic pain is a disease, not a symptom” is likely to elicit more patient-benefitting behaviour than “pain is an emergent property, not a symptom”.

    “Disease entity” = “Something to be treated/managed”.
    “Emergent property” = “???” ….. (That is, if I’m a busy healthcare professional, who has never really considered pain from a philosophical standpoint)

    In my view, having pain recognised as a disease entity is a good step forward, and may even set the scene for generally broader, deeper awareness and debate about the nature of pain in the future.

    I think;

    pain is a symptom—–> no, pain is a disease——> no, pain warrants further philosophical consideration as an emergent property

    is much more likely to happen in clinics and society generally than:

    pain is a symptom —–> no, pain warrants further philosophical consideration as an emergent property.

    So, guess I’d side with Cousins on this.

    Dr Mick Thacker Reply:

    Hi – your premise is understandable up to a point but ultimately leads you into the realm whereby you have to able to establish a firm diagnosis/mechanism for their pain – something which is extremely difficult e.g. there are at least 12 mechanisms that produce allodynia – the fact is that whichever mechanism/s are active that pain is still emergent as the result of the experience of the resultant processing-response to that mechanism not as a direct effect of that mechanism!
    This is liberating to you as a clinician as it offers several options for intervention – not that I am disregarding mechanisms – my own research background is mechanistic – but ultimately these mechanism are not what pain is! This is supported by the fact that not all pathologies result in pain !

    Aoibhean Martin Reply:

    Many thanks for your thought-provoking response Mick.

    I have been pondering this (more than I’d like) and for me, it has all come down to this: I think the experience of the processing-response is a PART OF the processing response. I don’t believe there is someone (or something) doing the “experiencing” separate to that processing system.

    I should clarify that it is my view that “mind” or “consciousness” is a brain process, i.e. I think my mind lives in my brain synapses, i.e. mind = brain.

    So my difficulty with pain as an “emergent property” probably coincides with my failure to see consciouness itself as an emergent property (depending on your definition of “emergent”). (My understanding is that you and Lorimer are suggesting one’s experience of “processing” is somehow distinct from the processing itself; but I may be completely misinterpreting your words here and if so, apologies!)

    I think that a change in an organism’s consciousness-producing circuitry – which seems to result in (or at least correlate with) that organism being in chronic pain – can usefully be labelled a “disease”. I’m not sure I agree with you that identifying chronic pain as a disease necessitates conclusive identification of all the underlying mechanisms involved.

    Dr Mick Thacker Reply:

    Hi Aoibhean
    Thanks for the reply – of course I agree that consciousness is neurally produced but to describe it as a product of synapses us nit warranted – if this were the case spinal transmission would be conscious – a muscle contraction would produce conciousness – clearly this not the case – something has to happen that involves transmission in some parts of the nervous system that produce consciousness – Edelman has produced one idea and Koch and Crick an alternative from neuroscience perspectives- Dennett however has criticised these from a philosophical perspective – I think the only thing we can say with confidence at present is that pain is emergent!!!!

  18. A very interesting discussion topic, thanks Lorimer.
    As far as pain is concerned i think this debate takes us to the very edge of knowledge, and challenges us in our understanding as to what pain ‘is’.
    What’s true for pain must surely be true for other subjective/sensory outputs such as anxiety and depression.

    I’m not sure where i stand on this yet. I’m worried that denying the existence of chronic pain as a disease entity might lead to a misinterpretation of the message as one of ‘pain denier’.

    I think i’d find it extremely challenging to explain to patients that their conscious appreciation of their pain reflects an underlying process related to an evaluation of their brain. I know that that is what’s happening but saying it out loud seems troublsome in a way that i can’t properly explain.

    And I have to confess Lorimer and Mick, that i have a problem with, i.e. i don’t really understand, pain as an ’emergent property’. I think i can see what you mean philosophically but at the same time it seems too non-specific and removed from the clinical context in which we deal with pain. I don’t know that we can expect patients to understand such esoteric concepts without potentially corrupting the therapeutic relationship.

    At the same time i can see the problems with exclusively neuro-biologising pain, because such models are also flawed.

    In addition to well-intentioned initiatives like this, i’ve also heard it said that pain relief should be seen as a ‘human right’. Clinically I fail regularly in this regard in my attempts to treat and rehabilitate patients presenting with pain. I don’t fancy ending up in front of European Court of Human Rights charged with violating the human rights of the patients i see!

    I’m rambling, its friday and my first patient of the afternoon (fracture/dislocation of the shoulder) is waiting so i’d best be off. Looking forward to the continuing debate.
    Keith

    Judy Reply:

    Keith,
    I’m afraid I must disagree with you on a couple points.
    Explaining to chronic pain patients that there a physical problem, “wiring” if you like, that is sending messages to the brain through a pain centre is easier to handle than giving them the impression that their personality or emotional makeup are the reasons why they are in pain. That leaves the patient feeling that, not only are they in pain, but they are warped to the point of causing their own pain. How does that help the therapeutic process?
    As far as pain relief as a human right, The International Association for the Study of Pain made that statement as part of the Montreal Declaration in August, 2010. If a physician has the ability to help in relieving pain and refuses to do so, how is that different from throwing someone into a torture chamber and walking away? Physicians take an oath, part of which states that they will do no harm. Far too many physicians are wrongly fearful that pain relief for a chronic pain patient will create an addict. Unfortunately, politicians who write the pain-control regulations also labour under that false assumption. Calling chronic pain a disease in itself may not be accurate, but it may be the first step in a long road to education about chronic pain diseases.

    Keith Smart Reply:

    Hi Judy. I don’t think i suggested either.

    Leslie Radentz, MD Reply:

    Terminal Cancer patients often suffer like hell, but inadequate pain relief from pain killers is not an automatic indictment of the character of the attending physician and certainly is not due to lack of classifying terminal cancer pain as “chronic pain”. The limiting factor of narcotics for terminal cancer pain is respiratory depression, loss of protective reflexes and death. Global Pain Policy statements can’t change the adverse effects of narcotics, or lessen a charge of manslaughter against an attending physician.

    The only effective pain treatments, that I know of, that are denied to terminal cancer patients are the natural and innovative solutions that are not reimbursable by managed health care payers.

    Click the “pages” section on Terminal Cancer of http://paradoxsolution.blogspot.com
    Leslie Radentz, MD 11-26-2011

    Heidi Reply:

    Hi Leslie
    I am one of the moderators of this site. Thank you for taking the time to comment. We ask contributors to refrain from promoting their own site or products here. Any comments should focus on the research being discussed in the blog posts.
    Thanks
    Heidi

    David Fitzgerald Reply:

    Keith
    I,m with you on the human right to pain relief issue currently in vogue.

    Not being a fan of an “entitlement culture” I don’t see why getting pain relief should have any higher priority than not getting cancer, arthritis, HIV etc.
    No one wants it but legislating not to get it / demand a resolution seems a little utopian or perhaps even delusional?

    PS As a pre-emptive strike – this does not mean I do not empathise with people in pain!

    David

    Judy Reply:

    As far as I know, physicians in the developed nations do not generally deny cancer patients treatment, or treatment for any other medical problem, however chronic pain patients are very often denied pain management medications. There is legislation restricting the prescribing of pain medications. Mostly these are opioid drugs, and that is where the problem lies. So far, science/pharmaceutical research has come up with nothing more effective for pain control. Some people do become addicted to these drugs, but, unless there is already an underlying addiction issue, very few chronic pain patients become addicts. If doctors do not learn this in medical school, then legislation is needed to ensure that chronic pain patients are not, literally, left out in the cold. Turning away chronic pain patients when they seek help with controlling pain because of addiction fears on the part of the doctor would be like denying a lung cancer patient treatment because some other people smoke. It is not a question of entitlement or priority, it is a question of caring for people with incurable chronic pain diseases. If changing the words to describe medical problems will help with the way we think about them, then I am all for this kind of double speak.

    Dr Mick Thacker Reply:

    Hi Keith – think that is the first tome I have been thought of as esoteric so maybe I am maturing 🙂 ! On a serious note – I can not see how s
    More accurate explanation of a complex phenomenon like pain can disturb the patient-therapist relationship. I would ask you as a response to tell me how you would explain to that new patient you mentioned – and I am assuming they had pain – where their pain is and how it got there? Mick x

  19. David FitzGerald says

    I think there is an issue at play here between public health infromation which in principal would have to be seen as a good thing (disregarding the specific’s of what,how,where and when) on the one hand and the desire to create momentum as a stimulus for change.

    We have public awarness adds in ireland now stating “if your back is stiff in the morning – you may have ankylosing spondylitis. Consult your GP, sponsored by Mega big pharam company! This is just one example of many I could quote.

    The arthritis society openly discuss “arthrits” as if it were all the same thing – blurring the lines between inflammatory, mechanical, infectous, auto-immune which are not one hommogoneous group in clinical practice but this strategy lends itself to the dissemination of information in nice format…but inaccurately in my view.

    Should a headache be investigated as a potential brain tumour?

    I dread the neurobiological consequences of a PR campaign expanding on the list of potential hazzard’s of life -a retrograde evolutionary step perhaps?

    No doubt Michael Cousins motive is entirely hounorable but I do wonder what type of off-spring it will create!

    David

  20. GREAT to have your input here Mick! Thanks a million indeed.

  21. Dr Mick Thacker says

    Hi all – I think Lorimer is correct in his summary and importantly is facilitating the emergence of philosophical constructs to better understand pain. I would urge all those who are interested in pain to broaden their perspective to include the appreciation of philosophical constructs relating to pain. Pain is not a disease or for that matter a
    sensation. It does not exist in the tissues or in the brain but rather is an emergent property as detailed by Lorimer – for too long philosophy and empirical scientific method have been seen as opposites – this is not only erroneous but has resulted in a retardation of a better understanding of pain – the result of which is to have to resort to labelling pain as a disease in order to demonstrate it’s importance to government, the public and fellow healthcare professionals.

    ian stevens Reply:

    Mick, nice to hear your thoughts. I joined the ethics and philosophy groups meeting the other year for reasons you describe . Perhaps you might be interested in some of the discussions from previous meetings …http://www.britishpainsociety.org/members_sigs_philosophy.htm
    I feel that the concept of ‘suffering’ is an important dimension in any discussion on pain. Pain , particularly chronic pain probably will not be answered by dissection of the research gained by neuroscience (fascinating and important as it is). A key book on the course I studied was Cassell’s The Nature of Suffering and the Goals of Medicine http://www.medscape.com/viewarticle/512438_6
    Cassell’s book and also Havi Carel’s excellent ‘Illness’ http://wandermythoughts.wordpress.com/tag/havi-carel/
    These books look at ‘health’ from a phenemenological perspective . This approach may enrich and broaden the discussion .The discussions raised by this literature also add some much needed humanity to balance a purely naturalistic way of thinking and interacting with people.
    You might also be interested in the recent radio four broadcast on the history of the brain –last nights closing comments by the philosopher Alva Noe sounded remarkably similar to your own!
    all the best ,

    ian

    Dr Mick Thacker Reply:

    Hi Ian
    My perspective is one based on phenomenology – hence the similarities you note. I am currently looking at the topic with one of my students -Kate Jolly – she is very smart – she understands this stuff better than me – so I will encourage her to comment. Thanks for the refs.
    Mick

    Geoff Reply:

    Hi Ian and Mick,

    As I was reading your posts, it reminded me of Chapman’s work on Consciousness and Constructivism: Chapman CR, Nakamura Y, Flores LY. Chronic pain and consciousness: A constructivist perspective. In: Gatchel RJ, Turk DC. Psychosocial factors in pain: critical perspectives. New York: The Guilford Press, 1999. pp. 35-55.) If you are familiar with this work is this in the realm of what you are referring to pain as an emergence into consciousness (kinda sounds like Schemata to me)?

    I agree with many posts about explaining pain as an emergent property being a challenge, but are you suggesting that pain actually be explained in this way (i.e. like the neurobiological approach), or approach pain education more in the form of pain discussion/illness narrative as a medical anthropologist would (e.g. Arthur Frank’s or Arthur Klienmann’s writings)?

    Thanks,
    Geoff

    Dr Mick Thacker Reply:

    Hi Geoff – we are definitely taking a existential-phenomenological approach – this leads to a first person neuroscience which is constructed from first person narrative combined with third person (neurobiological) assessment to address their experience – so the ready answer is both ! Mick

    ian stevens Reply:

    Great to see your smiling, unshaven face getting a Physiotherapy Fellowship Mick…well done . It was great for you to get recognised (together with Louis) for disseminating the neuroscience and pain research in a profession still dominated by Orthopaedics . Where can I access the movement as antigen stuff ?
    ian

  22. Great analysis and I to do not think it is a progressive step forward to call chronic pain a disease.Perhaps the only small positive benefit is that that it can be a labelled a ‘process’ in which case there is a beginning and end and it is therefore useful for patients to conceptulise and view with optimism if the outcome can be positive. A natural law(like gravity) is always 100% accurate but there is no such scenario, even close to it with ‘chronic pain disease.’ There are not many uniform features when just discussing pain only, but this alters when viewing the changes that occur in CNS.Changing the subcounscious meaning of the pain will alter the ‘process’ and the ‘painmatrix’ and membrane neruotransmitter recognition.

  23. I also strongly disagree with any suggestion that chronic pain should be seen as a disease in it’s own right…the obvious outcome is that GPs & even specialists who ought to know better but often don’t, will diagnose “chronic pain” without looking for the cause. When we stop asking “why” then we have real problems.
    There seems to be a strange acceptance in some people that pain is “normal” (personally that was true for me, which is why my diagnoses came so very, very late). If doctors don’t have any urgency to find out why they will become complacent (“more complacent” perhaps I ought to have said).
    In the age of the 7 minute appointment there is already no time for a doctor to find a cause for disease, and given “I don’t know” is not currently an acceptable answer, a quick diagnosis of “Chronic Pain” without examination is likely to replace a number of referrals to pain clinics & rheumatologists. It’s also likely to replace the current diagnosis from behind the desk “fibromyalgia”.
    And what treatment – is it shrugged shoulders or do we go straight to the opiates? Knowing why someone experiences chronic pain is fundamental to knowing that they do experience chronic pain. A lot of the time we won’t find the answer. Does it mean we should not try? Clearly we should try.
    It matches the trend of diagnosing “Chronic Fatigue Syndrome” & stopping looking for anything else immediately, leaving thousands of people without thorough investigation & diagnosis. Neither pain nor fatigue ought to be treated lightly, but granting them their own status as disease only describes the situation (& not very well), and suggests further examination is pointless. A shameful position for physicians, and no help to patients.

  24. Can’t wait to read the debate that ensues! I go back and forth on this one. I’m sure most subscribers of this blog have seen this article by Tracey and Bushnell http://www.ncbi.nlm.nih.gov/pubmed/19878862 – it offers another interesting perspective while remaining firmly planted on the fence.

    I know this will be poopoo’d a bit, but just to play devils advocate: Considering this debate on whether chronic pain is a disease in its own right is far from solved, perhaps there are social agenda’s for advocating for a disease label for chronic pain? I don’t necessarily mean this in a bad way, but as enlightened as many in this blog are, the medical model is still likely pervasive in the political environment. So, while I agree labeling chronic pain as a disease is potentially a step back from the biopsychosocial model it may carry more weight politically leading to more resources (possibly validation as well) for the sufferers (both patient and researchers). In a round about way (and somewhat paradoxical) labelling chronic pain as a disease might just bring a social perspective from a biomedical viewpoint. Chronic pain sufferers experience their pain in this social context and have long been stuck in ‘no-mans land’ – not fitting the injury model nor the chronic disease management models, both of which require disease ‘status’ for membership. In an unfortunate way it seems to be better to be ‘marked’ than ‘unmarked’ (which is oddly contrary to definitions of stigma – usually the marked are disadvantaged by the unmarked). As far as a scientific debate goes I definitely do not disagree with Lorimer, but from an advocacy perspective, I also can’t disagree with painAustralia either …

  25. While chronic pain may not be a disease in its own right, there are chronic pain diseases. The benefit is calling chronic pain a disease may be in the education of MDs, far too many of whom do not recognize pain as a disease and therefore do not treat it. So, while, from the science perspective, pain may not be viewed as a disease in itself, from a social and psychological point of view, it may be useful. Medical students do not spend much time studying chronic pain diseases, and with a shift in thinking about pain, calling it a disease, perhaps this will change.

    Lorimer Reply:

    nice point judy – i can see this perspective and i am sure that this is a big part of the motivation behind the catch phrase. i can also see the political advantage of the catch phrase. I don’t however, think it is accurate.

    Leslie Radentz, MD Reply:

    Chronic pain involves the entire spectrum of refractory pain from the mildly annoying neuritis of racket ball enthusiasts to debilitating reflex sympathetic dystrophy (CRPS). Chronic pain can refer to the mild neck ache of muscle tension from performing surgery every day to the horror of post herpetic neuralgia. It is the drug industry’s agenda to paint the immense categorization of “chronic pain” with the most heart wrenching examples of human suffering. This propaganda will evoke political policy mandates that all “chronic pain” patients should be treated with drugs, and specifically, narcotics.

    The agenda to define “chronic pain” as a unique entity is a medico-political strategy to promote consumption of narcotics by the milder pain cases within the proposed diagnosis of “chronic pain”. Do the math: Which category of chronic pain cases is greater? Milder, often correctable, chronic pain is VASTLY more common than extreme debilitating pain. Who is going to profit by promoting narcotic consumption in this untapped market of mild “chronic pain”? Milder pain patients will be subjected to the morbidity and mortality risks of narcotic exposure as their doctors try to practice medicine in a “politically correct” fashion.

    Passionate proclamations that all patients with chronic pain “deserve pain control” sounds good on the surface, but will offer NO hope to those suffering with the worst pain levels of refractory pain syndromes. The patients with the most severe “chronic pain” rarely find adequate pain resolution with drugs; in fact, the untoward side effects of narcotics often add to pain (with pseudo-obstruction, depression, sleep disturbances, impaired judgement, impaired reaction time, aspiration, respiratory depression, etc). The limiting factor for prescribing narcotics for severe pain syndromes is not public policy; it is respiratory depression and death. Physiologic tolerance to the analgesic effects of opioids does NOT protect the patient from the CNS depression effects of opioids.

    Expanding the diagnosis of severe pain syndromes to “chronic pain” will increase the exposure of the milder “chronic pain” cases to drugs, which otherwise would be avoided. No policy statement is being considered to raise dosing limitations for “chronic pain” with protection for the prescribing physician of the severest pain cases. If the patient dies from higher off-label dosing of narcotics, the Manufacturer will indict the physician for disregarding the FDA approved maximal dose guidelines and/or will indict the patient as an “addict”. No placebo controlled double blinded randomized trials are being proposed to attain FDA approval for longer narcotic treatment courses or higher maximal dosing of narcotics, steroids, or NSAIDs for the proposed entity of “chronic Pain”, not even for the terminal cancer pain patients with the category of “chronic pain”.

    In summary, The agenda to globally expand “chronic pain”, from a symptom to an overly inclusive diagnosis, will only serve to adversely impact society with more drug related morbidity, mortality, and addiction for mild “chronic pain” sufferers. The political rally cry that “ALL Chronic pain deserves treatment” offers the worst pain syndromes NOTHING but the same old ineffective drug management.
    Leslie Radentz, MD 11-26-2011