Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome

Cases of something called post-viral fatigue have been known about for centuries, without controversy. There have been widespread cases of patients recovering from viral infections only to suffer lingering symptoms of exhaustion. Cases of this becoming chronic became well-documented in the mid 20th century, with patients reporting a wide-range of symptoms. The most common is persistent tiredness, but it can include problems sleeping, feelings of dizziness, muscle and joint paint, flu-like symptoms and difficulty thinking clearly.

Many sufferers are left unable to leave the house, and some can’t even get out of bed or read a book. There is no blood test for the condition, and doctors can only give a diagnosis by looking at the symptoms and by eliminating other things like depression and Lyme disease.

After diagnosis, the next issue is how to treat CFS. The health service generally recommends cognitive behavioural therapy combined with a graded exercise programme. This makes a lot of sufferers angry, as they insist that CFS has a purely physical cause, so talking about it with a therapist is no good. As far as exercise goes, they believe that if you fight the tiredness and push yourself, you will end up making yourself sicker.

Nick Duerden is a journalist and author who was in his early 40s with a young family when he got ill and found himself virtually unable to function physically. “At the end of 2011 I became mysteriously ill," he tells me. "I got flu for the third time in about 18 months – it was really bad, I had not had it like this before. Two weeks barely able to get out of bed. I never quite recovered. As soon as I felt halfway to human again I would go out to the shops and huff and puff and come back with flu symptoms. If I went swimming, flu would come back the next day, if I cycled, the flu would come back.”

Finding his life slowing down to the point of barely being able to get to the end of his street, Duerden’s wife insisted that he go to the doctor. The GP referred him to an immunologist, who diagnosed chronic fatigue syndrome but wasn’t able to offer any help beyond a bit of head scratching and telling him “go home and take it easy”. Going home and taking it easy was the one thing he didn’t have a problem with.

“If I’d broken my leg, or I had cancer, they would have been incredibly proactive,” he told my Healthy Beast podcast. “Something would have been done. So to be in the position where people say ‘we can’t really help you here, we don’t really know what to do’ – it is quite frustrating.”

In desperation to get his life back on track, Duerden found himself turning to alternative medicine. He went to see spiritual gurus, invited healing hands to be laid upon him, and even tried something called “F*** it therapy”. That is as delightfully direct as it sounds: a novel approach that believes pretty much any problem can simply be told to sod off.

Being a writer, and thankfully having just enough energy to think and type, Duerden decided to help battle through the illness by writing a book. Now, if a book about CFS and alternative medicine is bringing up at least one red flag in your mind, you are not alone. Get Well Soon: Adventures in Alternative Healthcare is a good read partly because Duerden is a talented, honest writer, but also because he has a good degree of scepticism about alternative therapies, and even about CFS itself.

One poignant thing in the book is when he talks about the reaction of friends and family. His wife and young daughters are patient and understanding, but you can tell there is a sense he feels he is letting them down by not being able to do school runs and bike rides with them like he did before.

Duerden admits to wondering to what extent he should be beholden to the illness. However, this does not play well with many in the chronic fatigue community and he has been strongly criticised by some sufferers for even entertaining the notion that CFS may not be as purely physical as some people think.

Although I enjoyed the book, I found myself disagreeing with some of the conclusions. Speaking to me now, Duerden has turned 50. His condition has improved to the point where he has got some of his normal life back, but is still severely limited. He is not housebound, but the amount he can do physically is very restricted and he regrets not being the man he once was. He openly questions how much of his physical limitation may be due to the fact that he is now older, and therefore naturally less energetic than when he was younger. And also, I suggest, because he has spent a lot of time sitting around the house.

What would happen, I want to know, if he just started forcing himself to do more, to gradually increase his levels of physical activity. This is where he hears the words of the CFS hardcore, who tell sufferers to be very careful not to exacerbate the condition. Duerden says he recently saw a cognitive behavioural therapist on the NHS, who told him: “Oh just ignore those people, they’re talking rubbish. You have to do more and more activity. You are very unfit. You have to get over this sense that physical therapy is bad.”

So why doesn’t he, for the sake of his family, just force himself to get out and do more? Duerden says he would, but he is caught between two sets of advice: one tells him to increase his physical activity; the other says that is the last thing he should be doing.

At this point, I can't help wondering whether sitting on the fence is not the best way forward. There is a telling phrase in what one expert told me.

“One of the characteristic features of chronic fatigue syndrome is profound tiredness after unaccustomed exercise,” said Dr Simon Aylwin, Consultant Endocrinologist at London Bridge Hospital. “It makes the immediate symptoms worse but does not make the condition worse. However, the mainstay of therapy is a graded exercise programme, gradually increasing daily activity over time, as well as cognitive behavioural therapy. One of the main predictors of a good outcome is a belief that the syndrome will get better.”

That last line, the idea that you can somehow believe yourself better, is the sort of thing that causes fury among those who believe that CFS is all to do with mitochondrial malfunctions, not willpower. ProHealth.com, a support group run by a man who describes himself as “the most-followed patient with ME/CFS on Twitter”, says in its Myths & Facts section: “Diseases are not caused by faulty thinking, they are caused by pathogens. Correcting a patient’s ‘illness beliefs’ cannot reduce the physiological effect or severity of a disease.”

Although Duerden thinks it may be more complicated than that, he is still haunted by phrases he has read on the internet. “Google is very good at scaring the crap out of you,” he says. “You read things like ‘a living hell’ and ‘no known cure’.”

When I press him on how much his body is letting him down, and how much he feels trapped by the condition, he brightens up and says: “On holiday I’m much better,” then he gestures to the home where he spends rather more than the average amount of time, and adds: “This is a neighbourhood of my declining health. If I go somewhere I’ve never been before I don’t have that barrier.”

Does this suggest that his body might perhaps be less unhealthy than he fears? There is a long pause. We agree to discuss it further at a later date.

Chronic fatigue syndrome is not uncommon. The ME Association estimates there are 250,000 sufferers in the UK, while other studies have indicated higher incidences. Saying that all these people are suffering from an imaginary illness seems unlikely, and at the very least it is lacking in humanity. But on the other side, ignoring the possible psychological element of any illness is blinkered, let alone one when the principal manifestation for many sufferers appears to be tiredness.

Acknowledging CFS as a real condition is the right thing to do. Calling it a life sentence is not.

Get Well Soon: Adventures in Alternative Healthcare by Nick Duerden is published by Bloomsbury. Nickduerden.co.uk