‘Shock, anger and concern from people with ME/CFS’ | we write to the Essex CFS service | 20 June 2014

June 20, 2014

To: Noreen Buckley – Service Manager, Essex CFS Service, Southend University Hospital

Dear Ms Buckley

I assume that you are aware of this response to the British Medical Journal that has been sent in by Dr Anthony Collings and David Newton from the Essex CFS Service.

Not surprisingly, it is causing a combination of shock, anger and concern from people who have ME/CFS:


This a view that I share.

Could I therefore query whether the view of causation, motivational gain and management of people with ME/CFS being put forward in this BMJ response represents official policy at the Essex CFS service?


Dr Charles Shepherd
Hon Medical Adviser, ME Association

BMJ response: http://www.bmj.com/content/329/7472/928?tab=responses


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
ransmission of memes vertically from parent to child.

Cultural separatism
Separatism creates a barrier to exposure of competing ideas

Horizontal transmission: beyond the family.

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

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

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:

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.
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).

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

7 thoughts on “‘Shock, anger and concern from people with ME/CFS’ | we write to the Essex CFS service | 20 June 2014”

  1. “What is the practical use of viewing CFS as a meme?”

    Well, I think we all know what that is.

  2. http://www.mitpressjournals.org/doi/pdf/10.1162/POSC_a_00057

    “The misunderstanding of memes: Biography of an unscientific object. 1976–1999”

    When the “meme” was introduced in 1976, it was as a metaphor intended to illuminate an evolutionary argument. By the late-1980s, however, we see from its use in major US newspapers that this original meaning had become obscured. The meme became a “virus of the mind”. (In the UK, this occurred slightly later.) It is also now clear that this becoming involved complex sustained interactions between scholars, journalists, and the letter-writing public. We must therefore read the “meme” through lenses provided by its popularization. The results are in turn suggestive of the processes of meaning-construction in scholarly communication more generally.

  3. Initially when I read the first paragraph, I assumed it was a paper to discuss the only ‘meme’ which exists in the world of ME/CFS, that of the psychologists and associate clinicians who, as Dawkins describes a ‘meme’, ‘propogate a belief’ of ME amongst themselves , in order for ‘self defence’ of their position, and ‘capacity to evolve’, to further propogate to others and extend their beliefs.
    These psychologists match the description of general patterns of meme transmission, identified by Aaron Lynch, as stated in this BMJ paper, being “preservational, adversative, and motivational”.

  4. Good grief! My first reaction on reading this latest BMJ offering (above) was to burst out laughing! Is there no end to the convolutions of the academic mind – esp when attempting to come up with a novel idea for a research paper? Why not just research the illness with an open mind?
    Secondly I realised – OMG – now I not only have ME, I have ME-ME! 🙂 🙂

  5. i think the origniator of the term meme, professor dawkins, would be horrified by the manner in which this concept has been abusively and wrongly applied to patients from cfs/me
    this form of pernicious abuse of status of guest writers in the bmj, has led to the scorn and contempt of this journal, that is held by patients, drs and carers of those with this dreadful neurological disease,
    drs have the capacity to do good but also to do harm, and the latter is what dr collings is effectively doing, planting and disemminating ideas that are gravely harmful to cfs/me patients around the world.
    jeremy bearman
    cape town

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