Get Well Soon

by Nick Duerden

  The fatigue itself presents differently from everyday tiredness. It is not eased by rest or sleep. It is easily provoked. The slightest physical exertion can result in the kind of exhaustion one might expect after running a great distance on little or no training. There are other related symptoms: many suffer from cognitive difficulties such as limited concentration (the aforementioned ‘brain fog’). There can be poor short-term memory, an inability to concentrate, and a general feeling of disorientation. Sleep can be problematical, either too little of it or too much. There can be pain in the muscles (fibromyalgia), and recurring headaches. There can be dizziness, nausea, palpitations. In some cases, the individual might be capable of light domestic tasks only; in severe cases, they are wheelchair-dependent, and can be unable to withstand loud noise or bright light. Those who weren’t depressed before might find themselves depressed now.

  There are moderate palliatives. Painkillers can be dispensed to help with muscle or joint pains, and anti-depressants for mood. But the sufferer must become expert in the management of their own life in ways they likely never have been before. They must manage their sleep better, their rest patterns, and those who believe relaxation simply occurs the moment they sit down will have to rethink their understanding of the word. Diet plays an integral role, because the body uses an awful lot of its daily energy resources on breaking down the food we introduce into it. Caffeine is not encouraged, neither bread, nor too much protein, too many carbohydrates, fatty food, fast food; heavy meals in general. Pulses, lentils, nuts, soup, lots of fruit and plenty of vegetables – all are great. Alcohol isn’t.

  Graded exercise therapy – which basically means extending your physical exertions over time – is recommended by the NHS and is considered the most effective treatment by those within the NHS who treat it. However, this is contested by many of the more vocal CFS sufferers, convinced it makes their symptoms worse, not better. CBT is frequently employed, though it does not cure the condition so much as help the individual manage the symptoms and, more pertinently, their reactions to them. There is much encouragement by all concerning that most loaded of phrases, ‘coping strategies’.

  The internet is full of stories of people whose lives are destroyed by CFS, while there are many self-published memoirs from former sufferers whose lives have been turned around during their recovery process, and who have become evangelical as a result. Where once it was shrouded in mystery, now it is becoming increasingly everyday. Many people in the public eye suffer from it – actors, pop stars, television presenters, writers. Few seem prepared to discuss it publicly.

  Ultimately, the sufferer must employ a largely do-it-yourself approach. They must investigate what is out there, and what works for whom and why, and how it might work for themselves. It’s a big ask when we are so used to relying on the medical community for help when we are ill, and so initially the prospect is frightening. It can be a wretchedly lonely business, too. But over time, such an approach can start to seem rather empowering.

  At the Optimum Health Clinic, they like to tell you that the first rocket to the moon, which did eventually reach its destination, was off course for 97 per cent of the time. At her whiteboard, Jess apologises for her drawing skills while sketching the moon, a rocket and a series of erratic dashes to convey its wavering path. ‘But what this is supposed to show,’ she explains, ‘is that every time it did go off course, it course-corrected, over and over again.’ She looks up from her drawing now, to make eye contact. ‘The key thing to remember is that it got there.’

  This will be the overriding message of these three days: do the work, and persistence will pay off. The course begins, and we start, naturally enough, at the beginning, with a discussion on chronic fatigue, the preconceptions and misconceptions, the limitations of the traditional recovery model, and how likely it is that what we have been told about our conditions to date by our doctors is wrong. ‘ME/CFS/fibromyalgia is not a mystery,’ Jess assures us. ‘And when we learn to understand the way our thoughts and emotions impact on our body and our recovery, we can re-take control and create consistent results on our healing journey.’

  The two students alongside me on the sofa make an earnest note of this, but it will take me several years to appreciate it, much less begin to act upon it.

  Many alternative health practitioners find their calling because they once had cause to seek alternative health practitioners themselves. The Optimum Health Clinic was founded in 2003 by Alex Howard. Howard developed symptoms consistent with chronic fatigue shortly after his 16th birthday, and spent the next seven years searching out potential cures and remedies. Once fully better, he set up the OHC with a team of analysts, many of whom had also recovered from their own fatigue issues.

  Howard is a ball of energy. YouTube footage of him, in which he discusses treatments and recent findings, reveals a man who can barely be contained by the chair he is sitting on. He gesticulates a lot, expresses as much with his face and hands as he does with his voice. You are left with the impression that he is someone who could beat you in a race by sheer determination alone. This is probably no bad thing for the figurehead of an organisation that aims to get you back your energy. He tells me that he set up the clinic as an antidote to the NHS’s approach, which is still, in his view, more traditional, and unsuccessful. There is still a big mind/body disconnect in traditional medicine, he says, traditional medicine dealing with each separately, individually, but never together. Alternative therapy, whose genesis comes from the East, has always focused on the mind and body together. We would do well, Howard says, to adopt a similar approach.

  ‘Chronic fatigue is burnout of the body. There are many different sources of that burnout, and many different variants, but it’s basically a state where the body crashes as a result of too many different sources of stress.’

  He says that stress and advances in technology mean it has become harder for people to fully switch off. The more we are stressed, the weaker our immune systems become, and so a lot of us are consistently tired for all sorts of reasons; they just haven’t been labelled yet.

  The OHC’s approach is a holistic one, and it tries to get people into the right state to heal before they can go on subsequently to do just that: heal. It offers a selection of treatments Howard and his team believe have the most effect. Many of them revolve around breaking the negative adrenalin loop the stress has created. It offers no quick fix, but rather the slow process of self-solution.

  ‘If you look at more established chronic illnesses like cancer,’ Howard says, ‘then there are many interventions for that on many different levels, and a lot of the research now is increasingly on the psychological and the emotional role in cancer, both in terms of stress being a causal factor but also in offering a better psycho-emotional support as part of the treatment in pursuit of better outcomes.’

  His hope is that the OHC model will be adapted to these chronic illnesses as well. In the meantime, he is another niche practitioner in a growing field, and like all such people, is bullishly confident that what his clinic offers really does help.

  I have heard of the fight-or-flight response before, of course, but have never previously given it much mind. As a species, we are programmed to pay more attention to bad news than good. This is purely Darwinian: survival of the fittest. We are designed in a way to look out for threat. Good news does not constitute a threat as much as bad news does, which is why the bad always affects us so much more than the good. This explains why, for example, we are so much more affected by criticism than by compliments.

  Our beliefs, negative ones especially, can be powerful, more so if they are consistent with a threat. We are perpetually switched on for threat much more than we are for an easy, nice or even happy life. The genes that survive are the ones that are most attuned to potential danger, and so, in some sense, the more nervy we are, the more on edge, the more likely we are to survive. It is our emotions that dominate our lives, not the thoughts in our head.

  Bu
t in order to remain healthy, we need to learn how to live a life without setting off those maladaptive stress responses. Too many of us live on adrenalin for too much of our lives, and so it is little wonder that eventually we become exhausted, mentally and physically, and that this makes us unwell.

  All of us here are caught up in our fight-or-flight response, constantly creating more adrenalin than our bodies either need or, in their current state, can deal with. Jess illustrates this by talking about a caveman. When this caveman was out hunting, he often encountered sabretooth tigers. The default setting of any sabretooth tiger was hunger, his next meal – caveman, say. And so the caveman had to make an instantaneous decision: stay and fight, or flee? Adrenalin would help him ride out this situation, and frequently equip him with the necessary smarts to get away.

  None of us are modern-day cavemen or women. We do not encounter such heightened threats in modern life, and so our responses do not need to be quite so alert or aggressive. But stress keeps us in this state anyway. We are doing what we can to survive, but we’ve got the maths wrong. We stress too much, and the more persistent it becomes, the less energy the body can produce, and so the more we begin, inevitably, to tire. Before long, the body enters into what feels like a permanent state of exhaustion. This means a rise in blood pressure, an impairment of the digestive function, a tailing off of energy production, and an increased susceptibility to infections and long-term illness. This impacts everywhere – the body, the brain – and it grinds down each until, one way or another, metaphorically or literally, we collapse.

  Understanding all this on a theoretical level isn’t enough, says Jess. Just because we understand the point she is making does not mean we now have the tools to reverse such deeply ingrained habits. In order to even begin to heal, one must spend more time in a healing state than in a distressed state. If you have already spent time in a distressed state, then you have much work to do because the body is now convinced that everywhere lies threat. In some cases, each time you do something – walk to the park or from the bedroom to the bathroom, or attempt to complete some homework – the body creates a silent siren: mayday, mayday. At this trigger, the body produces adrenalin, which changes hormone patterns, which plays merry hell with the digestive function, which saps strength. Days, months and years can pass in this fashion.

  The clinic recommends meditation, yoga, and also suggests we consider dismantling life as we know it in favour of new ways of seeing, doing, being.

  It strikes me that there is a compulsion, not only at the clinic but in medicine in general, to separate everybody into absolute types. We are easier, as patients, to assist if we conform to a type. And if we have something like chronic fatigue, then it is also likely we are of a particular psychological type.

  Jess is talking now about these types, and says we need to find out which one we believe we fall into. First, there is the Helper Type. This is someone who puts everybody before themselves to the extent that they overlook their own needs and end up feeling disconnected from themselves and from life in general. Then there is the Achiever Type, who believes that the only way to be accepted and loved is to achieve and succeed. But the Achiever Type has difficulty acknowledging their own success, and so always craves bigger, better, more, the underlying fear being that without perpetual achievement, we – and life itself – are nothing. The Anxiety Type is someone who believes nothing is safe, that the world is in constant peril, a disaster movie made real, and that danger lies everywhere, on every door handle, every toilet seat, every turbulence-ridden transatlantic flight. Then there is the Trauma Type, a person who has suffered greatly in life, from the death of a loved one to a persistent illness, or who was perhaps the victim of an assault or attack and remained scarred as a result.

  I sit listening to this with my friend in IT still asleep beside me, and the poor woman with fibromyalgia still weeping quietly in the next chair along, and I wonder which type I might be. I think I am too selfish to be a Helper Type. Jess explained that she was a Helper, and offered as an example the fact that she would often completely forget to feed herself while taking care of her children. I am very fond of my children most days, and I think I am fairly attentive to them, but I have never forgotten to feed myself. Elena later suggests I might be an Achiever, but the two students with me at the clinic are both Achiever Types, and they speak about the importance of getting A grades, and how anything less brings only shame and self-loathing. I rarely got A grades at school. And now I’m a freelance writer, a perpetually perilous profession I am not sure any Achiever Type would be quite so prepared to put up with. Which perhaps makes me an Anxious Type? I definitely have anxieties. I fastidiously check all foodstuffs in the fridge for sell-by dates, and ever since a friend of mine developed tinnitus I find myself turning the sound down on my iPod just in case. But I do not consider the world a dangerous place. Turbulence has never frightened me, nor the dentist’s drill. I am also prepared to sit on public toilet seats if the need arises.

  That leaves Trauma. When I was 21, as I was helping my mother move from the now-empty family house into a small flat, the large frameless mirror I was carrying to the removal van hit the front step, split and fell heavily, neatly slicing my right wrist an inch away from where I may have chosen to cut it myself if ever I wanted to try dying. The wound required 11 stitches, but I remember that the nurse was lovely, and calming, and that I was actually rather proud of the scar afterwards. So on reflection, I don’t think this could possibly constitute Trauma. Later, when I have one-to-one counselling with one of the clinic’s therapists, it is decided that maybe I have a kind of lower-t trauma after all, not because of the mirror, but because of my childhood in general, the product of divorced parents, a depressive mother, an absent father. The psychiatric world view, clearly, tallies with Larkin’s. Later still, Elena will kindly point out to me my myriad behavioural tics, many of which, she believes, are redolent of Anxiety. The fact that I recognise myself in her description, despite having been blissfully unaware of them previously, makes me want to hold my head in my hands and howl.

  Sometimes, Jess tells us, chronic fatigue might simply be genetic. After all, everybody deals with issues in their lives, and not everyone gets fatigue, do they? Just as not everybody who smokes will develop cancer, or have a stroke. Our genes do not necessarily have to determine the outcome of our lives, however. It is how we approach life itself, from a mental perspective, that counts.

  All this information is new to me, and I have precious little idea how to navigate it. I sit in this room with my fellow patients, looking to all intents and purposes keen and thoughtful, but it is too much to take in in one sitting, and I am still not sure I should be here at all. The suggestion Jess makes – that we change so much about us and our circumstances as a matter of great urgency – is overwhelming. How am I supposed to go about doing that?

  She stresses again that we need to be in a healing state. To do this, we must stem our overactive imaginations from lingering in their unhealthy corners, and become instead positive. This is not easy, and we shall have to work at it. We need to learn to recognise the very moment we start to run negative patterns in our minds. The point at which my own thoughts stray to my fatigue, she says, which sparks again the worry over it, is the point I need to challenge it, physically and audibly. I need to shout ‘STOP!’ and throw out my hands in a ‘STOP!’ fashion. I have to centre myself, to become aware of my hands, my feet, my breathing. Do this, and I will begin to learn to free myself of this heightened stress response. I have, too, to repeat some positive affirmations, to see myself better, unshackled from exhaustion and returned to health. These have to be vivid visualisations. ‘Turn the colour up loud,’ says Jess, ‘and do it many times a day.’ ‘How many?’ asks one of the students, Biro in hand. ‘Ten,’ she says. ‘Twenty. Hundreds, if necessary.’

  This seems unfeasible, and so we spend a lot of time now perfecting it, standing in front of the group and repeating our positive statements o
ut loud, trying hard not to blush before our audience. It is all rather a rigmarole, but then this, I suppose, is the point. The brain likes its habits, and quickly reaches for them; to break them, a rigmarole is precisely what is needed, words and actions combined, and repeated over and over again, without a thought of how silly we might look or feel. This new territory comes with all new rules.

  If this all feels fairly straightforward, a method of self-control I can at least theoretically appreciate, then EFT requires more of a leap of faith. This treatment, Emotional Freedom Techniques, has been described as a ‘modern energy therapy’, which presumably means it is not the kind of thing you should talk to your doctor about. It is claimed that EFT has provided thousands with relief from pain, disease and a variety of emotional issues. It is essentially acupuncture without the needles, whereby you establish energy meridian points along your body by tapping them with your fingertips while focusing on the problem. ‘The cause of all negative emotions is an imbalance in the body system,’ I read. ‘Our unresolved negative emotions are major contributions to most physical pains and diseases.’

  The internet tells me EFT is ‘catching the attention of healers and spiritualists’, which under normal circumstances is enough to put me off, and though the process may be a simple one, it is difficult to overcome a feeling of acute self-consciousness while doing it. It is methodically ritualistic: you stand and repeat the same affirmation you did during the STOP! process while manipulating a sore spot several inches above your left nipple (and it is referred to as a ‘sore spot’ because if you find it and rub it, it doesn’t tickle). You then begin a process of tapping your body seven times on specific points around the body: the top of the head, the eyebrow, the side of the eye, under the eye, beneath the nose, on the chin, on the collarbone and under the arm.

  It works by releasing blockages within the energy system, and it is these blockages that are the source of emotional intensity and discomfort. Such blockages limit beliefs and behaviours and the ‘ability to live life harmoniously’. Emotional disharmony is believed to be a key factor in physical symptoms, and techniques such as this one are gradually being introduced within psychotherapy circles. Though its roots stretch back a long way, invariably to the East, it was created, and given its New Age handle, in the 1990s. Many practitioners report remarkable success, and it is said to be particularly good for helping to deal with anxiety, depression, insecurities and eating disorders.