Get Well Soon

by Nick Duerden

  Later: The neighbour’s motorbike has just burst into flames, and was completely burnt out by the time the fire brigade arrived. So some good news, then. Ha.

  Seven

  Nobody else knows; they’ve no idea. This is my secret alone, albeit one I must reluctantly share with Elena. And it’s a shameful one. I feel ashamed of what has happened to me, of what I have somehow allowed to occur. I still feel I could have prevented this, though quite how I’m not sure: by being stronger? More Teflon-like? But my sense of self has been destroyed these past few months; I am not who I thought I was. I’ve travelled so far from there to here, and so quickly. It’s all too intangible a condition to share with anyone and expect them to fully understand it when I still don’t understand it myself. And so I keep it a guilty secret.

  If friends come to visit, I can act as normal around the kitchen table as anyone else, and if they notice I’m not drinking, they don’t mention it. When we visit friends, we drive, even if they happen to live two streets away, because how else am I to get there? But this makes things awkward. When we are visiting friends who live two streets away, I don’t particularly want them to see us arrive. They’ll think us lazy, or else spectacularly unconcerned about our carbon footprint. So I insist that Elena drops us off, as quietly as possible, near their front door, then quickly and covertly parks around the corner before we ring the bell together, a ridiculous pantomime I cannot quite see any way out of. It is surely no coincidence that I become pronouncedly reluctant to indulge in any social activity whatsoever. All I really want to do is hide.

  And those people who do know, those whom Elena has confided in, don’t understand the true scale of it. They know that I am ‘unwell’, but it is clearly a vague, even mysterious kind of unwell, because I haven’t been in hospital; I don’t look any different. I’m not on crutches; my skin hasn’t come out in blotches. I haven’t shed weight; haven’t lost my hair. I can hold a conversation the way I always did, and can laugh and joke as normal. In company, I have learned to conceal it well. I don’t want anyone’s sympathy or pity, or, worse, their amused confusion. ‘Wait, you’re still tired?’

  Elena tries to prompt me into direct, combative action, increasingly convinced that I have given in to the illness and retreated to such an extent that I might struggle ever to emerge from it. For the past few months now, our lives have shrunk exponentially, and everything we do is strictly regimented around my increasingly limited abilities. I walk nowhere now because I cannot. If the weather is fine, and Elena impatient, I might concede to accompanying them on a picnic, but it has to be on a patch of grass no more than two metres from the car. And while everyone else is busy strolling around or playing games, I will remain on my patch of grass, going nowhere. There are newly logical reasons for this. Every excursion now requires of me some mental mathematics. I have to assess the distance, the number of footsteps required of me, and then come to the helpless conclusion that it is simply too far, that it will take too much out of me. ‘I don’t have the energy’ used to be a figurative phrase. Now it’s a literal one.

  The ‘no known cure’ taunt I’d read online has clearly had a profound impact. At some level, I already believe myself a helpless case. Life has changed so profoundly and so quickly these past few months that I cannot envisage things returning to the way they were. This is the new me now, and I must get used to it. But Elena, for one, doesn’t want to get used to it, and worries that we have become a family that goes nowhere and does nothing. Recently, she told me that she was frantic during these months, distressed at having lost the man she had married, that she no longer fully recognised me, this helpless victim. She was fearful, too, for what we as a unit would become. Because what kind of life was this? And how sustainable, long term, could it really be?

  After six long months, by now desperate for a plan of action, Elena comes across something called the Optimum Health Clinic (OHC). Based in London, it offers ‘award-winning support for ME, CFS and Fibromyalgia’. When she shows me their site the following morning, I stall on the ‘award-winning’ bit, mystified that it is possible to win stuff for such things, but she insists I read on. It’s an ‘integrative medicine clinic with a specialism in the diagnosis and treatment of the condition’. It offers something called the 90 Day Programme, for which it is necessary to attend a three-day course at its HQ which, although the website boasts a Harley Street address, actually operates out of somewhere in North-west London. The course is expensive, £625, but the site claims that the total value of what is on offer – three days, a book, some CDs and DVDs – actually has a total value of over £1,000, and so the £625 in fact represents a ‘massive concession’. It also offers a nutritional consultation, which it believes to be key in treating the condition successfully, at an additional £235, with follow-up appointments available at £125 an hour.

  I am still doing the maths when Elena says, ‘You should do it. It might help. And we’ve got to do something. We can’t go on like this.’

  I take a minicab there, and my driver is not happy about it. The journey takes us from one periphery of London to another, and we spend two hours crossing through endless congestion and many diversions. At one point, we nearly collide with a woman at a zebra crossing. It takes me a moment to realise the squeal of breaks I can hear is coming from this car. ‘Fool lady,’ he mutters.

  Later, turning to me, which means taking his eyes off the road, something I would rather he didn’t do, my driver says, ‘You should be taking train. This is too far for cab.’

  Architecturally speaking, given the disposition of its visitors, the Optimum Health Clinic boasts bad feng shui. It is a tall, handsome brick building located halfway down a quiet residential street, with a massive front and two potential entry points, one at either end, both of which can only be accessed by scaling a steep metal staircase. I ascend one, buzz, wait in the freezing cold for a reply, only to be told by a disembodied voice I am at the wrong door and need to go to the other one. When I am eventually permitted entry, I find another staircase, which I walk up slowly, puffing in a state of nervous anticipation.

  I will be here for the next three days on what promises to be an intensive programme of information and instruction in pursuit of restored health and resumed well-being. For the first time, I am doing something proactive about my fatigue, in public, with other people. I set my phone to vibrate, then think better of it, and set it to silent.

  The course is run by people who have had fatigue-related conditions themselves. Each of them has got better – in many cases, fully better. Framed photographs of staff members and former patients litter every window ledge, many of them featured in outdoor pursuits, in the wilds of nature, in walking gear, on bicycles, halfway up mountains. The message is blunt, but exciting and abundantly clear: See? We are active and healthy again.

  I arrive, at last, at a large, high-ceilinged room, a long table at one end, next to a small adjoining kitchen, and at the other two large sofas in front of a whiteboard. Somebody, I do not catch her name but she is an OHC assistant, a former patient herself now training to become a practitioner, is on hand to make us herbal tea (strictly no coffee here, no caffeine), and to share with us her own journey from illness back to health. She used to be a lawyer. Now she is doing this. We fall into music talk, and she tells me she has recently been to T in the Park, Scotland’s Glastonbury, and had felt tired but manageably so, and only towards the end of the third day. ‘Had a fantastic time,’ she beams.

  She introduces my fellow attendees, all of whom had arrived earlier than me. There are six of us, five men, one woman. We are later told that this is unusual; it is normally more evenly balanced between the sexes. The six of us range in age. The youngest is 18, the oldest in her 60s. Two are students, and exceedingly shy. One is a former city worker, another in IT.

  Introductions are awkward. Aside from the two students, it is clear that the rest of us haven’t been in anything resembling a classroom – as this essentially is – in decade
s. We are a disparate bunch, and none of us really want to acknowledge, at least initially, the only thing we do have in common. It takes two cups of green tea before the former city worker, now in his 50s, comes over to talk to me. He is balding, and dressed in corduroys. His face and demeanour seem to me in perfect harmony, both full of an open friendliness and genuine warmth.

  ‘So, how long have you had it?’ he asks me.

  I try to sound perky in my response, as if to convey to him that I shouldn’t really be here at all, as if it’s nothing major, nothing I can’t handle. ‘Six months,’ I smile. ‘You?’

  He meets my smile, and raises it. He does seem particularly jovial. ‘Oh, over 20 years now. You get used to it after a while.’

  I flinch. I do not want to hear this, and feel almost angry at his presumption that I might. Who says I’m going to have this for 20 years? I turn away, on the pretence of filling my cup. I see the woman in her 60s sitting quietly by herself, tears pooling in her eyes. We later learn that she almost always has tears in her eyes, because she is always crying. ‘It hurts so badly, you see.’ She has had fibromyalgia, essentially chronic fatigue with pain, for decades. ‘Most of my adult life,’ she says.

  I grow hot and uncomfortable. I want to leave. The realisation that I might be among my new peer group makes me shudder. If I could, I’d run. Tuning back into the collective conversation, I hear that both the former city worker and the man in IT play music, one the organ, the other the guitar. This conversation continues until the OHC assistant gently reminds us that it would perhaps be better to focus on the reason we are here. We laugh, but all of us feel chastened, and we settle back into a stilted silence. I fight the impulse to check my phone for messages. Out there, real life, normal life, continues without me.

  And then Jess arrives, our practitioner, the woman who will lead us through these three days, and on into the following 87 of the 90-day programme as we make our way back to health, and to the point at which we too can send in photographs of our newly active selves in all-weather North Face gear.

  Jess is in her late 30s, and is dressed for the office in white blouse, black skirt, modest heels. She was once a primary school teacher, a detail confirmed by her easy-to-follow manner, the way she makes eye contact, and how well she deconstructs complicated information into bite-size chunks for better digestion.

  She begins by telling us that she too once had the condition, and that hers was so bad she couldn’t leave her bed for months, her house for even longer. I notice that she is careful not to put a specific number on precisely how long, lest we use it as some kind of marker for ourselves. I am glad she doesn’t. I don’t want to know how long she was unwell, nor how long it had taken her to get better. Already in my head I have Dr Dolittle taunt: ‘Could you afford to live off your wife’s salary for a year?’

  Jess says that, at her very worst, a trip to the bathroom for her was almost, but mercifully not quite, impossible. As she was the mother of two small children, her husband was forced to multi-task day and night, which took a toll. The former city worker nods in empathy. But she, Jess, is better now, and had felt so motivated by her recovery that she wanted to help others in similar situations. So she quit her teaching job and retrained as a psychotherapist specialising in ME and CFS cases. She tells us about the last holiday she went on, skiing with her family. The two oldest people in the room, who have suffered the longest, gasp audibly. Both have been ill for such a long time that Jess’s ability to ski is greeted like a Lourdes miracle worthy of hallelujahs.

  We are each given A4-sized folders whose cover reads ‘The 90 Day Programme: Inspiration, Integration and Transformation’. It has a picture on the front of a woman in a red dress running carefree through a field, arms outstretched. Inside are maybe 150 pages of information, with chapters headed The Healing Zone, Your Body’s Intelligence, Emotional Freedom and Beginning the Integration. I have not felt so daunted about reading anything since Mr Farrell insisted we finish Moon Fleet by the end of the week, a book none of us in second-year English had even started. We were to be tested on it. (I would get a C–.)

  In front of us, at the whiteboard, Jess picks up a Magic Marker and starts to talk. On the sofa, I sit up straight. Beside me, the IT worker gives in helplessly to temporary sleep. The students take notes, the woman with fibromyalgia cries quietly to herself.

  The term chronic fatigue syndrome is relatively new to science. It was first coined in 1996, but its general symptoms have history dating back several hundred years. In the 19th century, a neurologist called George Miller Beard, finding links between fatigue, anxiety, headaches, depression and even impotence, came up with the term ‘neurasthenia’ – ‘a mechanical weakness of actual nerves rather than the more metaphorical nerves’. By 1955, doctors at the London Royal Free Hospital believed that the disorder was caused by inflammation of the brain and spinal cord, and recorded so many cases streaming in through their doors at that time that they considered it an epidemic, as if one might catch it like flu. By the 1960s and ’70s, the symptoms were becoming more frequently attributed to a condition called chronic brucellosis (fever, malaise, tiredness), as well as to psychiatric disorders and depressions. It came fully into its own a decade later when it earned the nickname yuppie flu, and was widely, if ultimately erroneously, perceived to inflict high-flying city types in pressurised jobs, burning the candle at both ends and exploding somewhere in the middle. In 1996, in the UK, a report was requested into all the research to date, the results of which came up with the current label, chronic fatigue syndrome (often known by its acronym, CFS). Shortly after, in America, the Centers for Disease Control & Prevention recognised CFS as a serious illness, and in June 2006 launched a campaign to raise public and medical awareness. It now has World Health Organization status as a ‘disease of the central nervous system’.

  Invariably, as with so many newly identified illnesses, there is controversy surrounding the precise nature of it, both its cause and its subsequent treatment. The NHS’s treatment of CFS is, according to many outside that institution, insubstantial. But the NHS stands firm. This is largely because, I am told, the traditional medical world works on a paradigm of medicine where one looks for specific individual causes of illness for which interventional treatment can be developed. So, for example, if you have a headache, you take a pill; if you have cancer, you undergo chemotherapy. There is no drug for CFS, and chronic conditions are always much more difficult to treat than acute ones because chronic ones have so-called multi-systems that affect the body in so many different, and frequently mysterious, ways.

  When I speak to Alex Howard, the man behind the Optimum Health Clinic, he tells me that the medical world is still somewhat lost in regard to CFS because it doesn’t meet the usual ways of understanding illness. There needs to be much more research into it, he says, but research requires funding, and funding is often predicated on unwritten guarantees of success. CFS is too cloudy an issue, too complicated to treat, to warrant much funding.

  ‘But I would hope that in the next one to two decades that is going to change,’ he says.

  ‘One to two decades is a long time,’ I say.

  ‘It is, yes, but then these things do take a long time. It’s much easier getting research money for things that have already been established. It is easy to get funding for, say, cognitive behavioural therapy [CBT, which was pioneered in the 1960s as a way of conceptualising depression, and is now often prescribed as a form of treatment for those with CFS] than it is for CFS.’

  Chronic fatigue itself may be difficult to deal with, but the way in which we respond to it on an emotional level is much more straightforward. It is our very emotional responses to it that keep so many of us in the negative stress patterns on which it feeds. The fear becomes a difficult-to-escape loop, and the more evidence one builds up that physical activity prompts fatigue, the more the fatigue will follow physical activity. Before long, the sufferer is effectively brainwashed.

  I am one of the a
pproximately 62 per cent of cases whose fatigue was triggered after a virus. Many struggle to beat a flu, and many more had had glandular fever at some point in their lives. When I was 18 years old, and about to go to America for the first time, I was diagnosed with glandular fever. In the weeks preceding my departure, my glands had swollen, mumps-like, but the swelling quickly subsided, there were no other symptoms, and I felt fine. The doctor nevertheless told me to take it easy for a while. I explained that I was about to spend nine weeks in Pennsylvania playing sports from morning to night; the last thing I would be doing was relaxing. I asked him whether I should consider not going. His response was disarming. ‘Ha ha!’ he said. ‘Good luck!’

  Though Professor Peter White suggests otherwise, depression is commonly listed as the other major trigger in CFS cases, either of the chronic kind, or else circumstantial (i.e. prompted by a traumatic event – a bereavement, divorce, losing a job). And if not depression, then long-term stress, that most modern malaise which currently defines the 21st century perhaps more than anything else, is also a major factor. Recent figures suggest that fatigue now affects one in three people in the UK in some way, but this is widely considered to be an outdated figure. Given the difficulty over diagnosis, Alex Howard believes there are many more people whose daily lives are now consumed by an unexplained fatigue that they put up with until their body gives out. In many cases, it eventually will; for those whose bodies don’t, there isn’t much explanation as to why not. Some are simply tougher, more resilient, than others. It is reported that chronic fatigue affects three times as many women as it does men – although when I put this to other experts, the statistic is challenged – and that the average sufferer ranges in age from mid-20s to mid-40s. But children can also develop it, particularly students approaching exam time, and it can affect older people, too.