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The Affect Heuristic: how much does this thinking contribute to advocacy outcomes?

Discussion in 'General ME/CFS News' started by Firestormm, Aug 22, 2012.

  1. Firestormm

    Firestormm

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    Hi y'all,

    Moderator's if this isn't an appropriate place to post this I would be grateful if you could move.

    I was wondering if the following interpretation of Slovic's paper (which I will read later this evening) was worth discussing?

    Unfortunately I came across it whilst reading about the death of Tony Nicklinson this morning. If anyone would like to discuss this death or Tony's highly commendable campaigning; then I am happy to create a thread - but I really wanted to share some debate surrounding Slavic and what is said below:

    Now apply the above thinking to some of the issues that we continuously debate.

    Consider for example:
    • the nomenclature and labelling of our condition,
    • the definition,
    • or perhaps the NICE Guideline,
    • or the recommended treatments such as GET and CBT,
    • or the use of criteria such as ICCME, CCC, Fukuda, Oxford
    • try fund raising,
    • alternate treatment preferences,
    • acclaimed individuals in our world,
    • theories pertaining to aetiology,
    • triggers,
    • epidemiology,
    • campaigns
    ....well just about anything you can think of as being relevant to 'our condition' particularly and the effectiveness of advocacy, raising awareness, moving forward etc.

    If you think we do behave as Slovic appears to suggest (from the interpretation in the article above), then ask yourselves why and whether our approach to 'advocacy' might not be helped if we sought an alternate approach.

    Maybe one that didn't always go for the jugular all the time (assuming it does of course), but rather acknowledged the alternate position as well even if one felt that that position was not as good as was being reported.

    Am I talking about compromise? Hmm... I don't know. Perhaps. It's certainly how some progression occurs. It's a more realistic aim in a great many circumstances that I have been in myself prior to incapacity, even whilst I have been ill.

    Of course you could think the above is all pants but it struck a chord with me and if you do have any experience of this then you might have a view and want to debate.

    Fire :)
     
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  2. Enid

    Enid Senior Member

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    OK so Slovic is describing human nature. My bugbear is not finding the virus(s) present before the downward spiral into a bedbound "closed in" state - the original simple NHS blood test revealed nothing. Here on PR we see with proper testing viruses commonly being exposed. I suggest the NICE guidelines contain screening for the commonly found suspect triggers. In such an illness we all know GET/CBT is useless even dangerous.

    Brave man Tony Nicklinson to take to court - yes I agree all should be allowed a dignified death. So thanks for moving on a rethinking.
     
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  3. user9876

    user9876 Senior Member

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    The work of tversky and Kalneman seems very important when discussing decision making (which I believe is mentioned in the paper you point out). I think they talk about the way the quesion is asked as being important particularly where risk is involved. I cann't find the paper I'm thinking of but they give examples where questions suggesting risks or outcomes lead to different answers from the same people as the risks are thought of in different ways.

    I think they also talk about framing decisions (it could be Payne and Payne who worked in this area). That is a decision maker often makes a decision based only on the concepts immediately in their head. Hence recent previous experiance becomes very important. Payne then talks of the idea of a building code to help properly frame concepts for decision makers (my guess is that this idea is the same as using checklists etc).

    In terms of language I've always liked the work of George Lakoff on metaphore. Basically he says that the metaphor used to describe a situation helps frame it and form peoples opinions.

    So it seems important to think about how we say things. To phrase questions/statements properly, to ensure concepts are clear and easy to take in and hence in peoples minds.

    I remember being told the importance of deciding on realistic outcomes, identifying who makes decisions and who influences them. Play a long game with small steps.
     
    justinreilly likes this.
  4. Enid

    Enid Senior Member

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    I agree - a long game with small (maybe turning) steps though.But we have come a long way over my 12 years. I see Prof Newton says that it has taken patient advocacy (to wrest it from the psychiatrists - my words). Any emphasis on the biological pathologies (listing by Neurological, Endocrine, Immune, Vascular etc. all in one place and writ large sounds great to me) as more and more is being revealed.

    Re lack of thorough testing/screening in the first place (certainly here) is due to the absence of the "tools" to do it. A simple UK blood test and the words "there is nothing wrong with you" QED seems to me the crux of the problem.
     
  5. xchocoholic

    xchocoholic Senior Member

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    I don't see the problem in patients thinking this way since most of us are uneducated in human anatomy,
    biology, chemistry, etc but rather in the people who are educated in these areas
    and have chosen to take the easy route.

    Tc .. X
     
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  6. Aileen

    Aileen Senior Member

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    Very thought-provoking Firestormm. Although this is not exactly what you are talking about, it goes along with the idea of changing tactics and taking small steps. Perhaps we should employ a tactic we use a lot here in Canada -- compromise. If you do "X" for us, we'll back off of "Y" for you (at least temporarily).

    People tend to be more open to doing something for you if they are going to get something in return and/or if you are seen to be reasonable. Let's take the example of 2 fictional people Mary and John:

    1. Mary asks the powerbroker (doctor/politician etc) for quality virus/bacterial screening for the microbial suspects we know to often turn up. (either for herself or as a representative of a group speaking for patients in the country). She then acknowledges that she and/or other patients/patient groups have been fighting to against several initiatives and agrees to stop opposing initiative X if the microbial screening is put in place.

    2. John asks the powerbroker for the same viral/bacterial screening. He then goes on to point out he (or patients in his country) deserve this at the very least because not only are they denied this but they are being hurt by initiatives A, B and C and also denied D and E. It's about time the powerbroker did something to help and this is just one small thing, so how about it?

    Now, if you were the powerbroker, would you be more inclined to help Mary or John?

    Perhaps we can come up with a few actual examples. I think we pretty much agree that we all need access to proper viral testing. It is pretty basic. Doesn't require a lot of complicated explaining like RNase L testing for example. So, in your country, what might you agree to stop fighting against at the moment or agree not to have access to at the moment (that you don't have anyway) in order to get the powers that be to agree to it? You have to start somewhere. They key word here is "start".
     
  7. alex3619

    alex3619 Senior Member

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    The "affect" heuristic is already being used - in psychobabble. Its part of what they are using to pursue their agenda. Its a deliberate use of language. I have numerous examples that will appear in my book, though I haven't begun collating and analyzing most yet. We, and just about anyone, can fall into the trap unaware. However there are players in the psychosomatic field who consistently use subtle and not so subtle associations to discredit alternate views. They are well aware of the psychology, and use it to great effect. They can even pursuade highly intelligent and trained people such as medical professionals. Intelligence and medical training does not make one immune.

    Its not just in CFS though. Its about a wide ranging raft of conditions which various groups are trying to have seen as psychosomatic. This includes MCS, GWS, fibro, ME, etc. This use of language is something I have pointed out before. These people are smart. They understand the impact of language on attitude.

    Please note I am not saying its a conspiracy, though I have no doubt some collusions do go on from time to time. It is however an entrenched long term strategy that has proved effective again and again ... so they keep doing it. Its science and medicine by rhetoric rather than logic and reason. Over time many of my blogs will come back to this, as my analysis continues.

    Compromise can be used against us too. If we don't compromise, we are fanatics. If we do compromise, watch things change in appearance but not substance. In order to get real change, we have to reach decision makers who are not overly biased, or who are currently uncommitted. Spectacular objective evidence still remains our best bet - a major scientific breakthrough. We also need agreed milestones.

    In my book I intend to be very damning of psychosomatic medicine, Zombie Science, and evidence based medicine. Its not just a critique though. I am thinking long and hard about how the system can be fixed. All the problems are fixable to some extent, although I still have yet to see one redeeming feature of the dysfunctional belief model of psychosomatic illness. In particular I am thinking about a paradigm shift in psychiatric research. The issues that make it unscientific arise from it not fitting traditional scientific research methodologies, but they have failed to develop robust alternative methodologies, instead opting for the trappings of accepted science practice while leaving out the substance.

    For example, exercise programs could be researched and implemented for ME if they used what we know of the exercise physiology, rather than using unsubstantiated psychiatric hypotheses to guide exercise. We could make a point of that.

    Similarly many of us would probably benefit from psychological counselling - but not if it presumes our problems are entirely or substantially due to dysfunctional beliefs. The underlying idea of psychosomatic medicine, pre-Freud, was sound I think. Post-Freud it became a nonsense, and we are still seeing that today.

    So there are grounds for compromise, but to do that the proponents of the dysfunctional belief model would have to come to grips with the objective science. So far they simply avoid it, or dismiss it, or use diversionay arguments to sideline it.

    The other problem we are facing at the moment is a global austerity movement. Real change is hard in times of austerity.

    Bye, Alex
     
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  8. alex3619

    alex3619 Senior Member

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    With respect to doctors and others who are decision makers on more day to day issues to do with us, most are strongly constained by regulations imposed on them. Those regulations are enacted by organizations and government they do not have much influence over. Its possible to negotiate with a reasonable and unbiased medical practitioner, but this also presumes reasonable and unbiased regulations - otherwise they are still limited in what they can do.

    Similarly for testing, most tests are still not thoroughly supported in terms of benefits for treatment. Some antiviral and antibiotic strategies seem to work in some patients, but we don't know enough about who benefits the most. So there is some justification in the argument that we should not have those tests, because they do not lead to better outcomes in most cases. I think exceptions can be made of course, particularly with some viruses for which antiviral drugs are proving effective.

    What is missing is this: denial of testing has very little to do with there being no curative treatments. The primary aim of such testing, prior to further scientific breakthroughs in treatment, is to identify and measure disability. Testing is not just about treatment. Its about ascertaining whether a patient qualifies for private insurance benefits or government benefits. Denial of testing is one way to make this much harder. Instead, public funded research should in part be looking at defining and validating combinations of such tests, with the acknowledged aim that they are not for curing patients but to properly assess them.

    A second and often missed reason for testing is to give the treating medical practitioners enough information that they can do their job. If they don't know whats wrong with you, there is increased risk they will not help you and will instead cause harm.

    Bye, Alex
     
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  9. Firestormm

    Firestormm

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    Morning,

    Thanks for the comments :)

    I wonder how much of this is about realisation, risk assessment and an attempt to understand the other's point of view, or accepting and acknowledging that at least in part, they might have a point.

    If you realise that it is 'human nature' that challenges to an established point of view are likely to be at least questioned, or be seen as unrealistic, then by being aware of what those oppositions might be (and even understanding any practical limitations your challenge might lead to), and being prepared to take them into account and have them affect your views (e.g. carry out a risk (or probability) assessment) could lead to a more realistic outcome and reduce the chance of disappointment.

    There are plenty of dangers in doing a risk assessment and taking far more time to prepare (and enthusiasm or motivation and time would perhaps fight against doing them) but if one were to gain a greater understanding and appreciation of the 'other sides' view or of the limitations that they practically have to manage; it should lead to more realistic objectives being set before entering into any negotiation.

    I do wonder at times if all advocates even set themselves objectives, or if they consider how realistic they are. I think that if you approach advocacy as a business concept and apply similar approaches - including an assessment of risk that also takes into account the 'human nature' - you might avoid disappointment and be more successful.

    So that's my effort this morning at 'complexity and nuance' ;) I have more later I think. Got to take it easy today.

    Thanks again.

    Oh. You might find this worth a read. It's a bit long. I dare say some will consider this extract of particular interest - but stick with the main article if you are able. It's about 'Risk intelligence' and is from New Scientist May 2012:

    Credit due to IVI for the above link and content.
     
  10. Enid

    Enid Senior Member

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    I think the problem begins at square one - however one feels about the restrictions and controls placed on your ordinary GP - it has been said before by an eminent medical teacher to his students "you will have to forget half of what I'm saying" (ie medical knowledge/understanding advances rapidly). Trouble is they don't in a cosy closed mind (mostly) GP practice even want to keep up.

    How come my brother (Prof Neurolgy operating outside the restraints and dictat in the UK admits to the amount of time he has to spend following all the current research/findings in order to aid his patients).

    NICE rules the roost here - it is incumbant on them to be so advised.
     
  11. alex3619

    alex3619 Senior Member

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    The problem with medical practitioners world wide is they do not keep up to date. It is in fact impossible, even if they had all the resources available and did nothing else. There is too much to know. Specialists can come close by virtue of keeping their updates to a small area of knowledge. What we need is something like evidence based medicine (which NICE purports to do) only reliable and flexible. We don't have that, and the signs are not good that we will have that in my lifetime.Until we do the 17 year average gap between cutting edge medical research and what doctors know is going to widen.

    Of non-specialists I know only one doctor who keeps up to date - and that doctor concentrates on ME patients and autism. He also spends considerable time every week perusing the literature. In a busy modern practice, with limitations imposed by the insurance industry or regulators, this isn't going to happen. Its a rare medical practitioner who is going to lose considerable income so they can keep up to date.

    Bye, Alex
     
  12. Enid

    Enid Senior Member

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    Well I can't excuse it - falling flat in the street, passing out with expressions of all the latent viruses one knows there (polio/chicken pox etc) - the medical profession itself needs to realise specialism is just one of many departments.

    I recall asking my GP if there was anyone who could could consider all my symptoms as one illness - No said she all we have is these people examining one process or another - that's their interest and limit.So I find myself more than a liver, heart, bowel, bladder, womb, brain (forget the pathetics of mumbo jumbo psyches Wessely, Sharpe). Let real medics pool their increasing scientific understandiing as ME pathologies are more and more revealed. The "specialists" must learn they do not hold the key to everything. Look we have (and may continue to go through this illlness as the complications set in a whole process by lack of early recognotion and treatment) can only guide the almost totallly ignorant.

    But it's medicine out of the ark here. Collapsing in Accident and Emergency (picked up in the street) means the whole of United Kingdom medicine has eons to go.
     
  13. alex3619

    alex3619 Senior Member

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    Hi Enid, I don't think it should be excused either. I am trying to identify the issues. Lack of knowledge is a symptom of deeper issues, and cannot be easily fixed. One risk we face is the huge push for so-called evidence based medicine. The idea is nice, the implementation is bordering on dangerous. Its rubber stamp medicine funded by Zombie Science, and so the results are highly distorted. This could be fixed, but first the powers that are pushing EBM would have to want to. At the moment the attempts to do this kind of thing have given us the NICE guidelines for CFS and ME, which are not fit for purpose. If the bad practices to establish an evidence base continues, all we will get is more of the same.

    I do not see how we can fix this either without changing how we deliver information to medical practitioners. Perhaps not in the UK so much, but elsewhere that would include changing the way medical insurance works. Which may be resisted by the insurance industry unless they realize this is a way they can save a lot of money.

    If the EBM model set by NICE proliferates, so will highly distorted medicine. NICE has to be challenged.

    Bye, Alex
     
  14. Enid

    Enid Senior Member

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    alex - I appreciate all you doing. I want to know what has gone wrong in medicine - in the midst of useless tests (some pointers) I battled to the GP barely able to stand upright nor recognise things around me. Passing out to the their astonishments came later. I recall all the doubts on all their faces as I struggled. - the medical profession has lost it's real scientific basis and total humanity.(just too grand it appears) - it's real centre. Must try to find a Vet came to mind as problems increased.
     
  15. GracieJ

    GracieJ Senior Member

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    Still digesting the content of this thread, will re-read and think it through. Great stuff!!

    It certainly does not help our cause at all that care is so broken out and specialized. I have a friend on a heart medication that gives her stomach trouble... her cardiologist will not even look at it, referred her to a GI doctor. So now two doctors have their hand in the money grab. I find that insane and absurd on several levels.
     
  16. alex3619

    alex3619 Senior Member

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    Hi GracieJ, absurd indeed! I have written a blog on this, but I find that when responsibility is broken up into small parts and nobody is handling the big picture, the system tends to fail. A lack of accountability for the big pictures seems to be an issue at all levels of this problem - from doctors right up to governments.

    Bye, Alex
     
  17. xchocoholic

    xchocoholic Senior Member

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    Imho, Dr wahls explains this in her 50 minute video on TED. It's all in how they learn specific treatments
    drugs or procedures for treating diagnosis "x" versus getting to the root cause of "x". Dr mark hyman
    explains this too. Both of these mds became ill and then realized they didn't know how to fix themselves.

    From what I've seen many functional / integrative doctors have been to med school, started practicing
    the realized many of their patients were using holistic treatments , esp diet, successfully. Or as in dr wahls and dr hyman's case they became ill themselves. And many patients, inc me,
    were coming in asking them for specific advice on holistic treatments.

    I feel bad for these people but I also "assume" it is easy for them to learn so I "assume" that changing the way
    they do their jobs will be time consuming but easy.

    Tc . X
     

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