Nick Duerden 

Missing the fizz: my long battle to understand the mysteries of ME

Is chronic fatigue syndrome physiological or psychological? The medical world remains divided – leaving millions unsure about the efficacy of the treatment they receive
  
  

Nick Duerden, writer and freelance journalist
‘Writing about ME might not only help me get well, but also help others in comparable situations’ ... Nick Duerden. Photograph: Graeme Robertson/The Guardian

The point at which I realised just how confounding some illnesses – and the human beings that suffer them – are was when, three years into a mysterious illness, someone told me that I could beat it by eating a clove of garlic each morning.

This person – not a medical professional, it is perhaps unnecessary to point out – swore by its efficacy. By this stage, I had tried all sorts of things to get better – yoga, meditation, kinesiology, hypnotherapy – none of which had worked. So I took the garlic suggestion with the pinch of salt it deserved and resumed my search for a cure elsewhere. Correspondingly, I began to sympathise with poor doctors. No wonder they have such a hard time treating people like me.

I became ill in 2011, laid low by a virulent virus that depleted me in ways that were novel and awful. It did not lift and exhaustion became my new norm. Confusingly, my GP asked if there were problems in my marriage, while an immunologist suggested he would diagnose chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME), only I did not meet all of the diagnostic criteria.

Nevertheless, he encouraged me to sign up to his course in cognitive behavioural therapy (CBT), which, along with graded exercise therapy (GET), is how the NHS treats CFS cases. Google sternly warned me against both. Ultimately, I attempted to enrol anyway – who listens to Google? – but I was turned down after undergoing a quick Q&A in which I was deemed insufficiently depressed to qualify.

Several incapacitated years later, I decided that, if my illness was indeed NHS-resistant, I would immerse myself in the shadowy world of alternative therapy and write about it. Writing about it might not only help me get well, but also help others in comparable situations. Alternative therapy, I found, is every bit as contradictory as its mainstream counterpart, each therapist convinced they can fix you in their own way. I learned that there are many people just like me – somewhere in the region of 30 million worldwide – and that one in 10 people in the UK complain to their doctor of being tired all the time. However, despite our proliferation, treatment remains a hotly contested area.

A Pace trial – abbreviated from pacing, graded activity and cognitive behavioural therapy: a randomised evaluation – in 2011 reported positive results for CBT and GET, which ensured that the NHS continued to treat the condition in this manner. But last month new research was published to suggest that the first trial was “controversial”, because new analysis said CBT and GET “have no long-term benefits at all”.

Many patients, and some doctors, celebrated this analysis, convinced that the approach has always been wrong. But when I speak to one of the Pace trial’s authors, Prof Trudie Chalder of King’s College London, she tells me that she stands by its findings and that the patients she has treated over 30 years have routinely benefited as a result. Nevertheless, she adds: “There are groups of people who perceive all such trials negatively; I’m not sure why. Perhaps they think we are suggesting the problem is psychological. We’re not. This is simply a rehabilitative treatment to help manage the symptoms more effectively.”

But others argue this comes at the cost of researching other potential causes. Dr William Weir, a consultant physician in London, tells me that he is perplexed by doctors who continue to embrace the psychological doctrine of causation: “It has no scientific evidence base and proposes, absurdly, that patients are simply suffering from an ‘abnormal illness belief’, inappropriately placing the responsibility for their infirmity squarely on their shoulders.”

Instead, he points to research in the US that has found compelling evidence of the condition’s physical nature. It shows that patients with ME have far lower anaerobic thresholds than their healthier counterparts; for such people, exercising beyond their narrow limits depresses that threshold, rather than increasing it, which is the norm in healthy subjects. “It’s probably mitochondrial dysfunction,” he says, referring to the cellular components in our body that generate energy. “They have been disrupted in some way and no longer function properly. So this is where the research needs to focus, into reversing that disruption.”

While doctors rarely see eye to eye, mutual antipathy seems starkly prevalent here. “The arguments can be vitriolic, but not uniquely so,” Weir says. Multiple sclerosis and duodenal ulcers were once thought to be the result of psychological stress, but this has now been disproved. Weir believes this will happen here, too, at which point “many in the medical professional will have to eat much humble pie”.

In the US, a 36-year-old former Harvard student called Jennifer Brea fell ill with a virus in 2011 from which she failed to recover. Her ME became particularly severe. In 2017, she made a documentary, Unrest, about her quest for a cure. “Doctors are not being taught enough about chronic autoimmune diseases, because they are too fuzzy and uncertain,” she says. “It’s far more attractive for them to learn what is clear and simple, linear. As a result, they are failing patients.” While her British counterparts are being treated with psychology, she has been treated with drugs. As a result, she says: “I’m no longer bedbound.”

Elsewhere, the bickering endures. I find the psychological implications of enduring a long-term illness are compounded by having to deal with the competing voices on how best to treat it. Can there not be more collaboration between these two schools of thought? Surely both help. My adventures in alternative – mostly psychological – therapy improved my health, to a point, but I have always felt the illness is more physical. (Would I be consciously aware otherwise? Perhaps not.) But, despite much improvement, my energy levels still lack fizz. I miss the fizz.

I ask Weir how long he thinks the medical world will remain at odds over this and how long it will be before a cause is determined beyond dispute – at which point better treatment may become available. “I would say that within one to five years there will be a breakthrough,” he says. Reason to hope, then.

ME Awareness Week runs from 7-13 May. Get Well Soon by Nick Duerden is published by Bloomsbury

 

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