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

Firestormm

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This is a recent response to an editorial originally written in 2004 by Prof. Peter White. Brace yourselves:
Is Chronic Fatigue Syndrome a meme?

Anthony D Collings, Consultant Physician

David Newton

Essex CFS Service, Southend University Hospital SS00ry

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 CFS (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 Chronic Fatigue Syndrome fit this model?

CFS 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:
CFS 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 CFS 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. CFS 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 CFS (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 CFS: quite likely many factors combine to bring about the condition.

CFS 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 CFS, 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 CFS 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’ CFS sufferers. Of course, GET and CBT, the sole treatments with significant evidence for the efficacy in CFS treatment, could be viewed as processes of dememeing.

Following this model, avoiding reinforcing of the meme would be advisable: avoidance of CFS (ME) 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 CFS. 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 CFS services: reference to the meme model offers additional back-up for clinical practice.

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

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

Present mainstream treatments for CFS 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 CFS from a meme perspective.

1. Dawkins, Richard (1989), The Selfish Gene (2 ed.), Oxford University Press, p. 192, ISBN 0-19-286092-5,

2. Lynch, Aaron (1996), Thought contagion: how belief spreads through society, New York: BasicBooks, p. 208, ISBN 0-465-08467-2

3. Ross SE. (1999), “Memes” as infectious agents in psychosomatic illness. Ann Intern Med; 131: 867-871.

4. Sokratis Dinos,1* Bernadette Khoshaba,1 Deborah Ashby,2 Peter D White,1 James Nazroo,3Simon Wessely4 and Kamaldeep S Bhui1: A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping. International Journal of Epidemiology 2009;38:1554–1570

Competing interests: None declared
 

IreneF

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I think this attitude is more common in Europe than it is in the US. I would call it preaching to the choir, in that Collings is just reinforcing the NHS' position, without actually evaluating evidence for or against.

Any modern critic of CFS as a physiological condition has to contend with research showing the abnormalities we're all aware of. Admittedly, most of the new studies have not been replicated--yet--but they are coming from mainstream scientists, not internet wackos.
 

Roy S

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(Clears throat; speaks in best Churchillian voice)

I should like to express my deepest appreciation to the authors for reinvigorating my enthusiasm and inspiring me to continue with advocacy for the downtrodden patients and their families and supporters. We shall never surrender!
 

Firestormm

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Must admit I only skimmed it. I suppose one should try and understand WTF he's talking about in the first instance.

I am still uneasy about this being genuine, but then I can't see that it isn't a real submission. Just seems stupid to me: like he's suddenly read a book and thought 'Eureka!' this fits...

As far as I can tell a consultant named Anthony Collings does run the NHS Essex CFS/ME Service, but I don't know who/what 'David Newton' might refer to:

Anthony D Collings, Consultant Physician

David Newton
Essex CFS Service, Southend University Hospital SS00ry
Anyway, as I can't be arsed to try and understand his ramblings, I did forward to others, so perhaps it might get some more worthy comment than I can generate myself at this point.
 
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Sasha

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Yep - the great irony here is that the BPS model of CFS just seems to be an idea that won't die, regardless of the evidence against it.

The original idea of a 'meme' (these days used rather loosely) was that it's an idea like a successful gene, that has survived because it keeps replicating because it's well-suited to its environment. The social environment that makes this particular meme successful is one in which people want to blame and despise the sick so that they themselves can feel superior, and can feel safe from a disease that would frighten them if they let themselves face its reality.

Like I said, ugly psychology and a spectacular lack of insight on the part of the people who peddle this view.
 

user9876

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I think you could argue that CFS is a meme but its one spreading ignorance amongst the medical profession. Its not spread through families but through medical schools. And it encourages believers like Newton and Collings to attack patients or for believers to block research proposals so there beliefs are not challenged. It encourages believing doctors to cause repeated harm to patients with GET despite countless reports of bad side effects.

The problem is the believers in the CFS are willing to believe the poorest quality research, obvious manipulation of results such as PACE and fail to acknowledge other research looking at cause. They created the CFS name for their meme.

The CFS meme is not new we have seen it with MS, Asthma, parkinsons etc. Its a meme of not accepting we don't understand everything whilst believing that people should be able to control physical effects with their minds. Its irrational but too many doctors believe it.