Re: What causes chronic fatigue syndrome?
In her letter of 23 June 2014, Chapman (1) suggests that I am uniquely positioned to contribute to the discussion of Collings’ and Newton’s (2) contention that chronic fatigue syndrome is a meme: I have written about memes and memetics as well as suffering from CFS.
I became ill after a bout of ‘flu’ that I tried to ignore. Eventually I went to bed and could not get up again. It was about six months before I was able to start walking a little further each day. The more general cause (I am guessing) was many years of overwork and sleep deprivation. I learned my lesson, stayed in bed as long as I needed and since then have tried to live a more balanced life with more sleep. During that long illness I very slowly read Dennett (3), reread Dawkins (4) and became obsessed with memes – writing The Meme Machine (5) when I was strong enough.
I agree that CFS is a meme in some respects. Memes are information copied from person to person (or person to book, computer etc.). They include Internet memes as well as words, stories, songs, technologies, scientific theories, and communication systems. People are often confused about what is, or is not, a meme and I find the best solution is to rely on Dawkins’ original definition of a meme as ‘that which is imitated’ or, more generally, that which is copied. So if a design, object or behaviour was copied from someone else then it’s a meme; otherwise it’s not. So the phrase ‘chronic fatigue syndrome’ is a meme, as are many of the theories and treatments associated with that phrase.
Are the symptoms of CFS themselves memes? They could be if someone observed another person being ill and copied them, or if they altered their own symptoms to fit with what they saw in someone else. This is not impossible. We know that suicide can be contagious, as can anorexia and other serious conditions, but these do not appear as purely memes. People have underlying reasons for wanting to die or to starve themselves before they start reading or frequenting sufferers’ websites. Then the meme gives them a pattern to follow. This could be happening with CFS but we would need reliable evidence before concluding that it does, and Collings and Newton do not supply any.
I agree with them that understanding the role of memes in CFS may be helpful. I hope that in the future memetics may contribute to healthcare in many ways. However, “discouragement from indiscriminate reading around the subject” is unlikely to do much other than annoy people who want to find out more, and avoiding labelling people with CFS must be difficult. What else can doctors say to patients with unexplained fatigue that doesn’t improve? Until we understand the true causes of CFS (and there may be many) this catch-all term is necessary.
A better memetic approach is to spread alternative memes. As they note “Harmful memes can be displaced by benign memes”. The meme I would like to spread is this: Just because a symptom has a psychological cause that does not mean that it is ‘not real’, is ‘all in the mind’, or can be overcome by will power. Grief has psychological causes – we cannot end it by thinking it away. Anorexia has psychological causes but is incredibly hard to stop. I know this because my daughter had anorexia for ten years but is now well and writes about the process of recovery (6).
Those who express ‘shock, anger and concern’ (7) accuse Collings and Newton of malicious intent, “ignorance, bigotry, and outright cruelty” and call the article “appalling”, “sick and warped” and “batshit crazy”. A few respondents make cogent criticisms but these appear to be drowned out by those who just seem to take offence at the idea that their genuine illness may have psychological causes and memetic aspects. This thoughtless and aggressive response helps no one. A better understanding of memes, and better evidence, might help.
(1) Chapman, S. Re: What causes chronic fatigue syndrome? BMJ 23 June 2014
(2) Collings, A. and Newton, D. What causes chronic fatigue syndrome? BMJ 18 June 2014
(3) Dennett, D. (1995) Darwin’s Dangerous Idea, London, Penguin
(4) Dawkins,R. (1976) The Selfish Gene Oxford, Oxford University Press (new edition with additional material, 1989)
(5) Blackmore,S. (1999) The Meme Machine, Oxford, Oxford University Press.
(6) Troscianko, E. A hunger artist, blog on Psychology Today, http://www.psychologytoday.com/blog/hunger-artist
(7) Shepherd, C. ‘Shock, anger and concern from people with ME/CFS’ | we write to the Essex CFS service | 20 June 2014 http://www.meassociation.org.uk/2014/06/shock-anger-and-concern-from-peo...
Competing interests: No competing interests