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

zzz

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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.

Complex regional pain syndrome medicalises limb pain
BMJ 2014; 348 doi: http://dx.doi.org/10.1136/bmj.g2631 (Published 28 April 2014)
Cite this as: BMJ 2014;348:g2631

Christopher Bass, consultant liaison psychiatrist, John Radcliffe Hospital, Oxford OX3 9DU, UK

Christopher.bass{at}oxfordhealth.nhs.uk

Psychosocial factors may be more important than biomedical ones in type 1 disorder, writes Christopher Bass

I am a psychiatrist who has worked in general hospitals and pain clinics since the 1970s and have assessed many patients given a diagnosis of type 1 complex regional pain syndrome (CRPS). The syndrome is often diagnosed by inexperienced junior doctors when confronted by patients with unexplained symptoms, especially pain in the hands and feet. CRPS was once called algodystrophy, then reflex sympathetic dystrophy, but by 1994 the sympathetic component was abandoned and the current term was introduced.1 CRPS is part of a larger problem in chronic pain and reflects our lack of knowledge of causal mechanisms.
It has been my impression that increasing numbers of patients are being diagnosed with this disorder, and that incidence rates are increasing (estimates in 2007 of 50 000 new cases annually in USA).2 In my opinion excessive reliance on this so called biomedical diagnosis for these patients is misguided. How has this occurred?
Several new diagnostic criteria have been proposed,3 but they are not sufficiently objective or reliable.4 For example, criteria such as “continuing pain that is disproportionate to …
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:

Dr. Bass also misses the point that changing the name of a condition does not change its clinical presence. His suggestion of renaming CRPS (previously known as reflex sympathetic dystrophy) as “legache” or “armache” may be attractive to some, but is unlikely to make the pain “proportionate” to the inciting event or change the treatment options offered by doctors. History shows that changing the name of myalgic encephalomyelitis (ME) to chronic fatigue syndrome did not reduce the incidence of the condition or its impact on patients’ quality of life, but may have changed our uderstanding of its biologic origin or lack of it.
 

adreno

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There you have it, BPS is a meme:

Is the biopsychosocial model a meme?

18 June 2014

In his 1976 book ‘The Selfish Gene’ (1) Richard Dawkins coined the term ‘meme’. Dawkins used the term particularly in relation to religious beliefs and defined it as an idea or group of ideas which propagate between individuals and which share many of the characteristics of life, including the abilities of propagation and self defence, and the capacity to evolve.

The concept of culturally-driven disease-disorders is not new (2) and memes have been suggested as a means of cultural transmission in various disorders including, in a general sense, in BPS (3).

Meme-mediated syndromes, it may be argued, are common in the history of medicine, from railway brain which dogged early travellers on railways in the mid-1800s, manifesting itself as neurological agitation and psychosis, attributed by some at the time to invisible damage to the brain caused by the unaccustomed jolting which necessarily accompanied railway travel in that era, via neurasthenia, a term used in the 19th century to describe ‘nerve weakness’ to (perhaps) whiplash and fibromyalgia. They arise and fall or in the case, arguably, of neurasthenia, evolve, to suit the culture that they live within.

Aaron Lynch (2) described general patterns of meme transmission:

Transmission within families
Transmission of memes vertically from parent to child.

Cultural separatism
Separatism creates a barrier to exposure of competing ideas

Proselytic-transmission
Horizontal transmission: beyond the family.

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.

How well does the biopsychosocial model fit this model?

BPS has no known organic cause. It is diagnosed on the basis of exclusion of other morbidities which otherwise might explain the presenting symptoms. To use Lynch’s general patterns of meme transmission, with some examples:

Family:
BPS clusters do occur in families, for no known cause.

Adversative. Preservational.
There is a large group of sufferers who vociferously deny the possibility of a psychosocial cause for their symptoms, and discount accordingly the value of psychosocial treatments, though the only evidence based treatment addresses such causes. These sufferers tend to regard their condition as beyond cure

Cultural Separatism.
Proselytive:
It is generally accepted that membership of a BPS peer group is a predictor of poor outcome of treatment, and it has been argued that this may be due to negativity within the groups as to diagnosis, treatment and prognosis. BPS groups often make extensive use of information technology to promote their ideas and activities.

Conversely, it has been suggested that being Asian (groups, arguably, whose distinctive cultural identities might well form barriers to memes) is a protective factor against BPS (4)

Motivational:
A medical diagnosis can help to secure benefits and insurance recognition/validation.

It seems unlikely that memes alone account for the aetiology of BPS: quite likely many factors combine to bring about the condition.

BPS might perhaps be most usefully thought of an emergent phenomenon, an ordered entity arising from a disordered combination of psychological, memeological, social and behavioural factors, much as a wave emerges from the complex, chaotic interplay of wind on water.

It does however seem reasonable to conclude that the transmission, retention and evolution of the defining characteristics of BPS, particularly perhaps in the group one might term ‘Psychosocial Deniers’ might usefully be viewed through the meme model lens.

What is the practical use of viewing BPS as a meme?

Harmful memes can be displaced by benign memes, or influenced to evolve towards benignity. The mechanisms of bringing this about, as applied for instance in the ‘deprogramming’ of cultists may have useful applications in ‘dememeing’ BPS sufferers. Of course, GET and CBT, the sole treatments with significant evidence for the efficacy in BPS treatment, could be viewed as processes of dememeing.

Following this model, avoiding reinforcing of the meme would be advisable: avoidance of BPS peer groups; discouragement from indiscriminate reading around the subject (particularly on the Internet, a notoriously efficient spreader of memes); avoidance wherever possible of labelling sufferers with a diagnosis of BPS. Involvement of family therapists in treatment would be beneficial, to explore and combat vertical transmission.

Some or all of the above measures, as workers in the field would recognise, are followed to a lesser or greater extent by BPS services: reference to the meme model offers additional back-up for clinical practice.

BPS, then, might be usefully viewed as a meme, a dysfunctional culturally-transmitted idea-infection.

Characteristics of transmission and retention of BPS fit well the characteristics of meme transmission and retention described in the literature.

Present mainstream treatments for BPS make sense when viewed as a process of dememeing. Lessons may be learned for refinement of existing therapies or creation of new ones when viewing BPS from a meme perspective.
 
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Firestormm

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The latest response:

http://www.bmj.com/content/329/7472/928/rr/702639
19 June 2014

L Sam Lewis, GP Trainer

NHS, Surgery, Newport, Pembrokeshire, SA420TJ

Almost all of my patients with CFS/ME are self-diaqnosed, so when they say 'I think have "ME", I immediately agree.

Wherever I go , there is "ME" ?

Presumably those cases transmitted by Anthony Collings "MeMe" constitute the homozygous form ?
:bang-head::bang-head::vomit::bang-head:
 
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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.
 

Firestormm

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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.
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...
 

Marco

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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?
 

ukxmrv

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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.
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.
 
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Sasha

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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.
Thank you!

Why do I bother to write this?
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!
 
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Scarecrow

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

A.B.

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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.
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.
 
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meadowlark

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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.
 
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alex3619

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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.
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.
 

zzz

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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.
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.
 

natasa778

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I think this goes a long way to explain this

http://blogs.telegraph.co.uk/techno...se-with-treatable-diseases-get-more-sympathy/

though as others have said it is disappointing when people one (perhaps naively) assumes to be rational and intelligent cannot be self-analytical enough to resist this natural urge.
excellent blog, SPOT ON, thanks for posting


The patient lobby has so far concentrated on raising awareness of the realities of the disease – stories of people’s long, hopeless struggles with the condition are all over the internet. They have tried to raise the profile of medical findings around ME, and its association with various, more “valid” diseases: infection with Epstein Barr virus, for example, or Lyme disease. Still the prejudice drags on. But perhaps the patient lobby has been barking up the wrong tree.


... If someone’s story is too bad, and too hopeless, we find it hard to sympathise. It just seems to demand too much.
 

Sasha

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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.
 

Sean

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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.
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.