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BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014

Discussion in 'General ME/CFS News' started by Firestormm, Jun 18, 2014.

  1. zzz

    zzz Senior Member

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    I would think that the BMJ, while publishing articles of (less than) dubious verity, would be sure to check out well known names in their Rapid Response section. And here it is, a day later, and the post is still up.

    But lest we feel alone over at the BMJ, here's the beginning of an article on Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), a condition I once had in my foot after a botched operation. Once again, brace yourselves.

    But fear not, not all of British medicine is completely nuts! Of the nine Rapid Responses to this article, eight seemed to be opposed to it (though it took careful reading of a couple to determine their position, if any). And we even got mentioned in one:

     
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  2. adreno

    adreno 3% neanderthal

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    There you have it, BPS is a meme:

     
    Last edited: Jun 19, 2014
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  3. Firestormm

    Firestormm Guest

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    The latest response:

    :bang-head::bang-head::vomit::bang-head:
     
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  4. Jonathan Edwards

    Jonathan Edwards Board Member

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    In case anyone is in doubt abut my position on such things let me say that this is not just awful, it is very very awful and worse than even the worst comments above indicate. It is awful of 3 counts.

    1. It is dangerous because a lot of doctors will think they can diagnose this psychosomatic condition without bothering to find out if there is something else wrong.
    1. It is a crass insult to patients. Even if ME did have psychosomatic overtones doctors should know that this is not how you even help people with psychosomatic illness. There is clearly no evidence that interventions aimed at dealing with 'false beliefs' do anything. Somebody needs to take a basic lesson in human nature - how you talk to people in a way that does not piss them off completely - it helps to know a bit of that if you are doctor. Jesus - are they surprised that PWME are pissed off!
    3. The whole fabric of the proposal about memes and emergent phenomena is just hot air. It is the pseudoscientific psychobabble of people who do not understand ... well anything much to be honest. Emergent phenomenon is what you call something when you want to explain it by magic rather than science (and do some bonding with other dim people who like emergent phenomena). If anyone has any uncertainty - there is no intellectual content here whatever.

    And you will see that I clearly disprove the case that people who think that ME is a physical illness have a worse prognosis for their ME. My version only lasted 6 months after glandular fever and has not bothered me since. Can one believe that anyone could assume that someone who thinks there is something really wrong with them will have a worse prognosis because they believe that rather than maybe because in their case they are right - there really is something wrong?

    And what about this now proven biopsychosomatic illness of ME/CFS? Isn't it a bit of a problem that NO NON-PHYSICAL CAUSE has ever been demonstrated? That despite lots of theories nobody has been able to prove that it is psychosomatic after all? What a con! These people should be ashamed of themselves. There are subtle issues here, as we all know, but the analysis here is totally unhelpful and reinforces all the ways not to solve a problem. I have no axe to grind. I am interested in this illness because I see people suffer and I think there is an important biological problem to solve, not because I want to draw benefits. I have run out of sensible words - or maybe three more - I am horrified.

    Why do I bother to write this? Maybe to curry favour with people with ME? No, actually I am rather hoping that there are some other spies on this forum who might feed back to the authors. Why air a really stupid half baked idea at the expense of patients' feeling?

    Fortunately I read this on an empty stomach too.
     
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  5. user9876

    user9876 Senior Member

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    What is particularly concerning is that Sam Lewis is a GP trainer who presumably is training GPs to ignore, insult and dismiss patients.
     
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  6. Firestormm

    Firestormm Guest

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    Or at the very least his training can't help but reflect his feelings. I tell you - I seldom get angry - but the originating post and this subsequent one have left me seething.

    Letters have been submitted to Essex. Hope to hear more soon and some public expressions of outrage from patient organisations.

    This simply cannot be allowed to happen. Wrong on so many levels...
     
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  7. Marco

    Marco Old blackguard

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    @Jonathan Edwards

    Don't be too hard on him - sometimes these BPS diatribes remind me of a very poorly written A level essay.

    What I do wonder is how a concept such as 'psychosomatic' that merely adds a label can be accepted (reification) as an explanation (except in a miniscule number of cases) when it is so clearly unscientific?
     
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  8. ukxmrv

    ukxmrv Senior Member

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    and probably one of the trolls who stalks patients online and insults them every time it is mentioned in a newspaper

    @jonathon edwards

    It's a cruelty I've met over and over again in NHS hospitals particularly in the last 20 years. Smug, superior and sadistic. They think it is funny and being cruel to vulnerable and powerless people their right.

    Thank you for your post. One hopes that at some stage these people will have other colleagues who will tell them to stop. It hasn't happened up to now.
     
    Last edited: Jun 19, 2014
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  9. Sasha

    Sasha Fine, thank you

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    Thank you!

    Well, it certainly cheered me up! @Jonathan Edwards, do you fancy writing a response to the BMJ? We have some really superb, top-flight, world-famous scientists - you included, most certainly - who are working on our disease now and although I know you're all up to your eyeballs working on our behalf and there may be political issues that the rest of us aren't aware of, I'd love to see some of you (or others of your calibre) responding to this kind of thing in the journals that publish it. Not only would that torpedo a specific piece of offensive nonsense but we could quote you for the next ten years.

    I don't want to put you on the spot - no need to reply - but I wish that this was something that more of our researchers felt able to do. It's one thing patients writing in, but we need someone who outranks these idiots within their own profession.

    There's an enormous power imbalance between patients and doctors: we need doctors who will fight our corner and whom other doctors will respect.

    Rant over!
     
    Last edited: Jun 20, 2014
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  10. Scarecrow

    Scarecrow Senior Member

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    I realise that this was a rhetorical question but is there anyone here who can enlighten us?
     
  11. A.B.

    A.B. Senior Member

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    From their perspective, patients are just misbehaving. The abuse is a "social message" that this behaviour is not okay.

    One could probably write a lot of psychobabble as to why some people view vulnerable patients as misbehaving children.

    The wilful ignorance about physical abnormalities is a lot harder to explain. I suspect it's part ego, part evidence not being undeniable, part financial interests.
     
    Last edited: Jun 19, 2014
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  12. Bob

    Bob

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  13. meadowlark

    meadowlark Senior Member

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    The psychobabble model is itself a meme... a perpetual gridlock of doctors moving around and around and around and around, waving at each other in admiration. It's spectacular to me that the author of the letter can't see that.

    Really, everything he wrote here about memes fits the psychobabblers:

    Preservational
    Ideas that influence their hosts to hold them for a long time.

    Adversative
    Ideas that influence those that hold them to attack or sabotage competing ideas and/or those that hold them.

    Motivational
    Ideas that people adopt because they perceive some self–interest in adopting them ...

    etc. etc., right down the list.
     
    Last edited: Jun 19, 2014
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  14. alex3619

    alex3619 Senior Member

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    One of the issues is since the nineteenth century we have been led to expect people are rational. People use reason, they can be taught reason, they can discipline themselves to reason, but the underlying neurocognitive capacity is not reason. Its association and generalization. Reason is built on top of that.

    A powerful idea will compete with weaker ones. Someone who has invested in their life in psychobabble can indeed use reason to break out of dogma, but its much harder to do. They are probably thinking intuitively more than rationally. In any case even rational thinking is grounded in intuition ... and intuition is very fallible.

    Nobody is completely rational - there is not enough time, or brainpower or energy to do that even in healthy people, its a rationalist's dilemma. It cannot be done. What can be done is to discipline ourselves to reason about the things that are very important.

    Ignoring evidence is a clear sign that someone is not behaving rationally. Thinking might-bes and possiblies and maybes can be treated as certainty is another sign. Psychobabblers typically fall afoul of both of these issues.
     
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  15. zzz

    zzz Senior Member

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    This is very true, especially when you consider the brain from an evolutionary standpoint. The rational reasoning abilities in the prefrontal cortex are relatively new from an evolutionary standpoint. Although decision-making and behavioral control are also located here, there is no requirement that they be rational, and it is becoming increasingly documented how older parts of the brain influence these processes without our awareness. (The cover story on "Habits" in the current issue of Scientific American illustrates a number of examples of how this works.) We believe we are behaving rationally a lot more often than we are. In reality, there is merely a thin veneer of rationality overlaying the more primitive brain functions.

    In a related, relevant topic, it has been demonstrated how self deception is an evolutionarily positive quality. To achieve our goals, we often need to convince others of their correctness. This is much harder to do if we see the faults inherent in our goals, or how they are not good for others. But through self-deception, if we convince ourselves that our goals are the best for everyone and have no real drawbacks, we will be able to do a much better job of convincing others.

    So lack of rationality and self deception are hardwired in our brains, and it takes rigorous discipline to overcome them. We are unfortunately on the receiving end of seeing what happens when such discipline is not applied.
     
  16. DaiWelsh

    DaiWelsh

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  17. natasa778

    natasa778 Senior Member

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    excellent blog, SPOT ON, thanks for posting


     
  18. Sasha

    Sasha Fine, thank you

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    I think that blog puts its finger very well on an element of the psychology of denial of the reality of ME that goes on but the kind of mockery and contempt that is evidenced in the BMJ response that we're discussing comes from another psychological mechanism, in my opinion: the need to big oneself up by finding people to despise and publicly humiliating them. This is how "in-groups" and "out-groups" are formed.

    It's very, very basic and well-known psychology and the great irony, of course, is that the people proposing this psychological explanation of ME have no insight at all into their own psychology.

    Very ugly and self-serving indeed. Shame on them.
     
  19. ukxmrv

    ukxmrv Senior Member

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    AIDS patients had stories and experiences that were truly horrific yet huge public sympathy seemed to be swayed their way in the end.
     
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  20. Sean

    Sean Senior Member

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    It is an interesting question why they persist in their delusion.

    Other possible explanations include that they know full well what they are doing and the likely consequences; or that they started out as believers thinking they were genuinely doing the right thing, but as the evidence against their ideas mounted they couldn't admit it (and deal with the consequent loss of face, status, authority, influence, income, self-image, etc,) and so switched over to cynical arse-covering. Etc.

    Most likely some combination of all those.
     
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