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No, scientists haven’t discovered that ME ‘is not actually a chronic illness’

2 November 2015

5:02 PM

2 November 2015

5:02 PM

Is Chronic Fatigue Syndrome actually an illness? My Spectator colleague Rod Liddle believes that the game is up on this little understood-condition after a news report last week which said that CFS ‘is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively’ (the piece has since been amended online). This does sound rather strong, and perhaps a prompt to reconsider the way people with the condition are treated.

There is, though, a small problem. The paper on which the report is based – in Lancet Psychiatry – makes no such claim. What it does say is the following:

‘Chronic fatigue syndrome is characterised by chronic disabling fatigue in the absence of an alternative diagnosis. Myalgic encephalomyelitis is thought by some people to be the same disorder and by others to be a different disease. The prevalence of chronic fatigue syndrome is between 0·2% and 2·6% of people worldwide, 5 and, if untreated, prognosis for recovery is poor.’

It then adds:

‘Chronic fatigue syndrome is a disorder usually characterised by chronic disabling fatigue of at least 6 months’ duration in the absence of an alternative diagnosis. The overlap between chronic fatigue syndrome and myalgic encephalomyelitis is controversial. At least 20 different published case definitions now exist for chronic fatigue syndrome and myalgic encephalomyelitis; all emphasise fatigue, but they include different additional symptoms, have different exclusion criteria, and select patients with differing degrees of functional impairment. Definitions substantially overlap. A systematic review found no good evidence that any definition identifies patients with a specific disease aetiology.’

Saying that this is a spectrum disorder – ie, there are many definitions of this illness – is not the same as ‘not actually a chronic illness’. What it does suggest is that finding a treatment for a condition with such a wide range of symptoms (signified in the word ‘syndrome’, which means a collection of symptoms) might be rather difficult. It is, though, quite difficult to work out where any suggestion is made that this collection of symptoms does not constitute a chronic illness.

I’ve spoken to the lead author, Professor Michael Sharpe from the University of Oxford, and he is adamant that his study did not conclude or suggest that CFS is not actually a chronic illness. ‘Whatever people’s own views are on this, they cannot use this research to claim that,’ he says.

It is also difficult to work out where the paper says that ‘thinking positively’ makes patients recover from CFS/ME. What it does say is that a treatment called Cognitive Behavioural Therapy achieved better outcomes than standard medical care. CBT is a talking therapy which the NHS says ‘cannot cure the physical symptoms of [health conditions like CFS/ME] but it can help people cope better with their symptoms’. It is used – very effectively – to treat other serious illnesses like depression. ‘Thinking positively’ sounds like the patient is simply encouraged to buck their ideas up, or sing happily at rainbows while hanging dreamcatchers from their windows. That’s not what cognitive behavioural therapy does. The paper also suggested that graded exercise therapy – which is not a ‘walk in the park’ but help to gradually increase activity with monitoring – could improve a patient’s health too.

But Rod does make an interesting point about the reaction of what he calls the ‘ME lobby’, arguing that it ‘will now turn its bizarre loathing on the university’ which produced the paper. The ME lobby is very vociferous – sometimes, too much for its own good – and argues that GET has made many sufferers much worse, leaving some of them permanently disabled.

There are also some campaigners who furiously reject the idea that cognitive behavioural therapy might help, as this implies that CFS is a psychological condition. This is quite offensive to anyone with a mental health problem, given mental illnesses can be as debilitating as physical ones, but I suspect that it is a reaction to the old claim that CFS is ‘all in the mind’, which suggests it is at best psychosomatic and at worst just some layabout making up their illness in order to watch daytime TV (anyone who has watched daytime TV knows that this is not a particularly desirable way of spending your time).

The repeated objection from ME charities is that these treatments don’t help everyone and therefore they could be prescribed to patients who will suffer further as a result. But the study suggests that they help some patients. It is not, as some imply, irresponsible to report those findings, though it isn’t particularly helpful that those writing up the findings chose to summarise them in a rather glib fashion. But are the ME charities speaking for all those who fall into the many definitions of the illness that I’ve quoted above? Some of them make a distinction between ME and CFS, and some believe that many patients diagnosed as suffering from ME/CFS have something else (this is a strong possibility given ME is diagnosed when clinicians believe they have eliminated other problems as a possible cause of the symptoms). Perhaps they are campaigning on behalf of a group of patients whose illness really doesn’t respond well to the therapies that the researchers examined. Perhaps in time there will be research that finds a number of illnesses are unhelpfully clustered under the umbrella of CFS/ME.

So we can’t, really, claim that scientists have found that ME is not a chronic illness, unless there is another paper out there that concludes this that I’ve missed. But perhaps it is time to recognise that no one with an absolutely horrible, debilitating and humiliating illness is going to get a fair crack at recovering until the current stand-off between those trying to research it and those campaigning on behalf of certain groups of patients ends.

P.S. Wondering why I think some ME campaigners are too vociferous for their own good? Here are some responses to this blog.

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P.P.S. After this article I’ve been contacted by a number of very pleasant ME campaigners who have made a couple of points which I think it’s fair to represent.

The first is that CBT shouldn’t be promoted or used as a treatment for the illness, but that patients do not object to it being used as a way of helping patients adjust to very debilitating symptoms. They dispute the basis on which it is being used as a treatment in the study I cited above.

They also point out that the authors of the paper write that ‘there was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up’ and that their findings have then been extrapolated to suggest that CBT and GET improve outcomes when they don’t.

It is also worth reading Tom Kindlon’s response in the comments below this article.

I’m very happy to add these points, and to engage in a debate that helps those with ME/CFS get a better hearing. I’m not happy to engage with people who call me a ‘bitch’, who undermine the long slog that most of the members of the ‘ME lobby’ have undertaken to ensure better recognition so that an illness once dismissed as ‘yuppie flu’ is slowly being taken more seriously. Perhaps at some point there will even be a discovery as to its cause and a cure.

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