The Blog

Misrepresenting Scientific Data Exacerbates Public Misunderstanding, say ME Sufferers.

By examining too little - i.e. the narrow scope of one set of data - a bias is ushered in through the backdoor.

I've had ME for 10 years, and I'm not afraid of exercise. Neither is Jill Stratton whose Guardian article, last week beautifully captured the worries of many after The Telegraph published one claiming that 'ME: Fear of exercise exacerbates chronic fatigue syndrome, say researchers.'

The author of the Telegraph article, Sarah Knapton, maintains two claims throughout. First, she suggests that developing anxiety about exercise is a reason that ME sufferers become inactive. Secondly, alleviating the anxiety is the pathway back to activity.

She's right about the first, and only partially right about the second. Some ME patients - not all, and I'm lucky enough not to be one - do develop psychological anxiety about exercise. The scientific term for this is comorbidity, and it just means that patients with one disorder can end up suffering from others as a consequence.

But Knapton's article misrepresents this fact to rather disastrous effect - that is, from her first paragraph, she seems to endorse a stereotype. In her narrow focus on comorbid disorders, and silence on all the other ways ME patients can become debilitated, Knapton seems to suggest that anxiety is the main reason for their lack of exercise.

This is damaging to people who, like Jill, work hard (often despite their illness) to show the real physical debilities ME patients suffer every day. And it causes this damage in at least one crucial way. It drastically - likely accidentally - confuses how much we can infer from the KCL study data.

This confusion is apparent when Knapton takes this claim:

"They [KCL cognitive psychologists] found that many patients had a 'fear of exercise' but once they were encouraged to be more active through behavioural therapies, they started to improve..."

To be equivalent to this:

"Fear of exercise exacerbates ME and sufferers need to try and get up out of bed if they want to get better, a major study by King's College has found".

In its move from the first to the second, Knapton makes a drastic misstep. If the first is true - and the data supports that it is -, the best we can say is that patients' anxiety did improve to a point where it no longer significantly affects any physical activity the patient could do. In this sense, we could say that graded exercise therapies (GET) have positive physical consequences for patients.

But the study doesn't show the much weightier second claim that the article tries to make, which sounds curiously similar to the outmoded "Yuppie Flu" narrative - that ME patients are merely lazy -, which was most fashionable in the early 90s, when less science had been done on the illness.

In fact, it's been known for some time that GET improves the physical condition of patients. But we should also recognise that figuring out the causal relationship between ME and comorbid disorders is hard. And this study certainly hasn't done it yet.

We're still left with questions such as, are the physical improvements to ME symptoms alleviating the anxiety? Is alleviating anxiety improving physical conditions and symptoms? Or could some more subtle mixture of both occurring?

We don't know yet, the KCL psychologists don't claim to, and certainly neither Knapton.

We only have to look a little further afield to notice this. See Goudsmit, Stouten and Howes' 2009 study, which compares disability-levels in ME patients with comorbidity to patients without. The study draws complimentary conclusions to the one Knapton references - that is, comorbidity increases disability levels in patients, but that non-comorbid ME patients are still severely disabled. But that's not the picture Knapton paints with the information.

By examining too little - i.e. the narrow scope of one set of data - a bias is ushered in through the backdoor. As we've seen, Knapton's article doesn't consider that anxiety about exercise can be - and often is - a consequence of a patient's inability to do it. It's not the cause of disability in ME. So, whilst alleviating this anxiety can be an important step to recovery, it certainly doesn't justify the claim that all patients need to do is "... get up and out of bed".

According to Knapton, ME charities have said, "...the report was unhelpful as it insinuated that sufferers were simply lazy". Given that the study never claimed this, it seems to be the wrong place to look for the cause of harm. Though perhaps unwitting, it really is the misrepresentation of scientific research in articles like Knapton's that does the harmful work.