by Nick Duerden
My area of journalism, the most ephemeral and throwaway, rarely takes me anywhere officious and grown up, and so I am surprised to find myself, two days later, in an hour-long queue to get into the Houses of Parliament. The queue itself is nothing compared with Heathrow’s Terminal 3, but the security measures here are even more thorough. We are all potential security threats, insurrectionists, shoe bombers, likely wielders of belt buckles, and so studiously methodical pat-downs are mandatory, and terribly time-consuming. It is convincingly warm enough today to suggest that summer has arrived. I am overdressed in the only thing my wardrobe offered up as notionally smart: a pair of newish jeans, a shirt and a pair of shoes I last wore to somebody’s wedding.
The queue is not moving. I am accustomed to queues, but my legs are beginning to ache. It is a powerful ache. The more I become aware of it, the worse it gets, and I fight a growing impulse to leave, to find a seat, to sit down and let whatever it is that is happening to me pass.
By the time I reach the metal detectors, I am swamped in relief. They can have my shoes, my belt, my bag. I don’t care any more. The security staff, at least, are a good-natured bunch, smiling where their airport counterparts can only frown, and at last I am within the House itself. I make a beeline for the café, where I buy nothing, just sit and take the weight off my feet. Disarmingly, I am huffing and puffing, and hot under the collar in a way that has nothing to do with the heat.
I walk through the House’s grand hall, which hums with activity. The BBC’s Nick Robinson is in one alcove, doing a piece to camera; somebody from ITV is doing a similar thing in the alcove opposite. MPs recognisable from TV and lurid sex-life exposés walk leisurely past, hands in pockets, trailed by minions in their wake. Instinctively, I look out for The Thick of It’s Malcolm Tucker. I am here to attend a speech on smoking that will condemn the government’s continued public ban on nicotine. Presumably because the subject matter is a controversial one, the venue for the speech has been banished to the very end of the building, down several long corridors and out into a room that flanks the Thames which, this close up, looks sad and brown and full of sickness. Everybody here is out on the terrace, smoking copiously (cigarettes, pipes, cigars), many carelessly tossing their butts into the water afterwards.
The artist David Hockney, one of the guest speakers, arrives and people gather excitedly around him. A drink is bought for him at the busy bar, and the bar remains busy because the speeches are delayed. I look around, but find nowhere to sit, and I need, gravely, to do just that. I lean against the low wall outside and stare into a river too brown to offer back my reflection. I wonder what is happening to me, my legs. At the rim of my consciousness is an increasing awareness of a ballooning fear.
A torturous hour later – I leave early – the Circle Line takes me to Victoria, and from here I go overland to Clapham Junction and change for the train home. It is rush hour, and my carriage is packed. I have to stand. By now the urgency to sit is almost suffocating. I close my eyes and reach out for a handrail, willing the journey to pass quickly. I remember that my bike is waiting for me at the train station, and feel both relief that I don’t have to walk home and frantic at the prospect of having to cycle.
I make it back and go straight up to bed. Elena, still cooking dinner for the children, comes up. ‘You all right?’ The girls follow behind, jumping on the bed, using my chest as a pommel horse. They laugh and shout, and both talk over the other to tell me about their day. Drawn by the smell of cooking, they one by one go back downstairs again, and I roll over, turn on the radio, but hear nothing. My head is all over the place, thoughts racing.
Something is happening, I realise, something bad. A careless comment from a medic lacking in people skills sent me online, where I found at last concrete proof that what has been wrong with me these past six months is in fact serious, and is likely to get worse. No known cure. When Woody Allen is in the grip of a hypochondriac episode in Hannah and her Sisters, it is funny. He plays it for laughs, considering the slightest headache a tumour about to happen, then casts blindly about to find a religion quick, a willing God to accept him before it’s too late. I had not been much of a hypochondriac before. Am I one now?
The following day, I interview a 39-year-old schoolteacher who, six months previously, became aware that he was developing a limp in his right foot. I had originally planned to travel to Somerset to meet him at his house, but the exhaustion I had felt in Parliament has yet to lift; we speak on the telephone instead. He tells me that he had noticed it, the limp, when he went up the stairs at school. ‘It kind of flopped.’ He found the cycle into work harder each morning, and then noticed that he had lost a lot of weight from his right thigh. His GP agreed that this was ‘sinister’ and he was referred for tests. ‘Before he sent me away, he made me promise not to go onto Google,’ he tells me. A month later came the diagnosis: motor neurone disease. ‘It was absolutely devastating.’
I do not know what to say to him. This poor man, who would go on to campaign for greater funding into understanding and treatment for MND, refused to let his indomitable spirit dampen, at least for as long as he was capable. He is hopeful, he says, in the face of no hope at all. ‘I’ve my wife to think about, my children.’ I admire him for his bravery, and in his see that I have none. His experience casts mine into shadow, his being major, mine comparatively minor. But there are parallels: one day he was fine, the next day he was not. His would, and did just two cruel years later, come to an abrupt conclusion; mine, with its no known cure boast, might also prove a life sentence.
The panic attack, when it comes, is a new experience. I have never had one before. It is not quite as dramatic as I might have expected. I require no brown paper bag in which to breathe, and I do not scream, or flail, or pull at hair strands. But it is a panic attack; the internet confirms it.
‘A panic attack’, says the NHS web page dealing with stress, anxiety and depression, ‘is a rush of intense psychological and physical symptoms. They can be frightening and happen suddenly, often for no clear reason. They usually last between five and 20 minutes, and although it may feel as though you are in serious trouble, they aren’t dangerous and shouldn’t cause any physical harm. You may feel an overwhelming sense of fear and a sense of unreality, as if you are detached from the world around you. You may experience physical symptoms such as: palpitations, sweating, trembling, shortness of breath, chest pain.’
The paragraph is illustrated with a photograph. In the middle of what looks like a pink jelly mould is a red button upon which the word PANIC is written. You sense, looking at this picture, that if you touched it, it would wobble.
It is a Saturday afternoon, and hot. Wimbledon is into its second week. The girls, cooped up in the house all morning, are ready for air, to open the front door and run in any direction their feet take them. I have been unusually quiet all morning, Elena tells me. I have had much to think on. I have so many questions, and no idea to whom I can pose them.
Several years later, I will speak to an NHS chronic fatigue specialist, Professor Peter White, who will ask me why I didn’t seek a second opinion if Dolittle’s was so unsatisfying. At first I won’t know how to answer this question. My truthful response would be that I didn’t think to, that I thought the only people who asked for second opinions were those in films, or Americans. Perhaps second opinions were requested when people didn’t trust the original doctor’s prognosis. I had little reason to distrust Dr Dolittle; I just wished he had explained things a little more to me.
‘Ah, well, the NHS is not what it was, I’m afraid,’ Professor White will say. ‘Twenty years ago, you would have had an hour’s consultation, at least. But we are facing cuts of around £150,000 a year. We have more referrals, less money, fewer resources.’
He will say that four out of 10 cases of CFS are misdiagnosed by doctors and immunologists, ‘and so if you are not given the right diagnosis, it’s no surprise when the treatment they offer doesn’t work.’
But, as I say, that would not be until several years later.
Meanwhile, Dolittle’s diagnosis was that I had some kind of post-viral fatigue, but the treatment he recommended was for CFS and ME. In the absence of my wherewithal to demand a second opinion, I don’t know what to do. I need information, advice, but not of the hysterical, online kind. Dr Dolittle did say I should contact him again if I wanted to attend one of his classes, but at the moment I do not feel best disposed towards him. I cannot say that I particularly want to see the man again. Besides, Elena googled him. A number of people seem to have been upset by him; he is the subject of several blogs, their complaints all the more powerful because they are so competently written. A colleague of Elena’s at work, also recently diagnosed with a post-viral condition, wrote a letter of complaint to the hospital after a consultation with him.
I still need help, however. But from where?
Closing the door to the kitchen and my family, I sit in a chair in the living room and stare out of the window. A concrete block is pushing on my ribcage. I am having difficulty breathing.
Elena comes in. She looks at me with such compassion and worry that tears spring to my eyes. And then, abruptly, I start to cry. Behind her, the girls bound in, laughing and shouting. They stop short. They look at me in incomprehension. They have not seen me cry before.
‘I’ll take them out,’ Elena says, and ushers them back into the kitchen.
Before she leaves, she gives me a Post-it note on which is written a number and the words: ME/CFS Helpline. While I slept last night, she went online looking for help.
‘Call them,’ she says. ‘Call them, and see what they say. And then call me, yes?’
I watch them leave the house, walk down the garden path and away. Then I go upstairs to my room in order to watch them from the window as they round the corner before crossing the main road. My girls, in summer dresses and hats, are on their scooters, Elena walking proudly behind them. I become tearful again.
I attempt to calm myself down. I have to behave rationally, coolly. If I am ill, and if I am about to get worse, then there are things I need to do, now, quickly, just in case. I have one deadline outstanding. I was planning to write it up on Monday, but I write it up now, on Saturday, while I still can. I have no idea what state I might be in on Monday.
It is not a big piece; it takes me an hour. It’s only when I finish it that the panic returns. I find the Post-it note and dial the number. It starts ringing, but abruptly I hang up. I almost laugh at the teenage anticipation that runs through me, the prospect of having someone answer my call making me nervous and tongue-tied. I dial again, then hang up again upon the realisation that I have no idea what to say, or the order in which to say it. And so I make some notes.
I rehearse out loud what it is I want to say, the questions I might ask, and then call. The number rings and rings. I check the website, which says that it is open 24 hours a day, 365 days a year. I try again, then again. No answer.
I decide to watch the tennis, but cannot concentrate. The weight on my chest intensifies. I look out of the window and watch people pass, heading into town. I would feel sorry for myself, but I’m too busy feeling scared. The urge to cry is powerful. I’m having trouble breathing. What is happening to me? I think I’m having palpitations. I’ve become that pink jelly mould, PANIC in capital letters.
I call the helpline again, and the helpline’s failure to pick up seems only to confirm that I am in an awful lot of trouble here.
The girls arrive home. Elena arranges the children in front of the television with a snack while she and I retreat into the kitchen, closing the door behind us for the first of what will become a depressingly regular tête-à-tête. She reveals herself as good in a crisis, steady and reassuring. I am glad I married her.
The helpline people continue to not pick up, but NHS Direct does. The lady at the end of the line listens patiently, then arranges an emergency appointment for me within the hour, just after a dinner I have no appetite for. The doctor on call, a young Indian man on crutches (‘Rugby injury,’ he tells me, beaming) is kind and full of empathy. He shakes his head and clutches at it comically when I relay the immunologist’s diagnosis, and tells me he is sick of doctors who forget that their patients are not just cases but real people, and often vulnerable ones. He tells me nothing Elena hasn’t already told me, but it’s nice to hear soothing words from someone with a stethoscope around his neck. He tells me I’ve had a shock, that I’m dealing with a shock, and I’ll be fine. As for dealing with whatever this post-viral fatigue may be, he doesn’t quite know what to say. Perhaps I could go back to my GP and ask for their help?
Back at home, I go to bed early, and wake early on Sunday morning. For the first few seconds, my mind is blank. Then I remember. Everything is different now. I shall have to get used to it.
Chronic fatigue is an umbrella term for a variety of conditions with overlapping symptoms. Fatigue is the one constant, but it can manifest itself in all sorts of ways, including depression, muscle pain, constant headaches. There is a distinct difference between ME and CFS, but when Professor White, one of the world’s leading experts on the subject, explains them to me several years later, they sail far above my head, borne aloft by the buoyancy of complicated medical terms with far too many syllables to them. ME, it seems, is the more serious strand, which I suppose means CFS is its more manageable sibling.
Either way, neither has a particular pathology present. There is no blood test to confirm them. This is why GPs are so quick to refer patients elsewhere: they cannot diagnose it with the same emphasis they can with, say, lung cancer or heart disease. Those are concrete conditions; this one is an irritating enigma.
‘If it looks like CFS and smells like CFS,’ Professor White will say, ‘it could very likely be something else. It could be anaemia, sleep disorder, depression. But, still, CFS is the likely diagnosis to reach for.’
Consequently, more than half a million people in Britain currently labour under the impression they have it when they don’t (and I am one of them, though I won’t learn this key piece of information for another three years, when I see a new consultant), while many hundreds, possibly thousands, are still awaiting confirmation. If you have had persistent symptoms of fatigue for more than six months, and if no other medical explanation for those symptoms is forthcoming, then you are duly diagnosed. A course of treatment is then recommended, but recommendations differ wildly. The NHS favours Dr Dolittle’s graded exercise therapy (GET), as well as mindfulness cognitive behavioural therapy. Alternative practitioners, of which, as I will discover, there are a great many, tend to disagree with the NHS, and not merely on knee-jerk principle. GET, they say, is in fact dangerous, and will only make the patient worse, even set back their recovery. And of those who have attempted GET and suffered, a select but belligerent few have taken to sending their doctors death threats. They don’t carry the threats out, but it does get them column inches in newspapers, which in turn gives them a dubious reputation. It is for this reason that, before he would agree to be interviewed by me, I had to convince Peter White that I wasn’t another death-threatening crackpot (my terminology, not his) out for his blood.
I first come across Professor Peter White in the media. On 5 May 2013, the cover of the Sunday Times magazine is made up to look like a blackmail letter, words cut out and stuck unevenly, and thus sinisterly, together. It reads: YOU EVIL BAStARDS . . . WE’RE gOING to CUT YOUR balls off. STay out of ThIS . . . time is running OUT for you ALL. PRAY TO gOD for FORgiveness.
Underneath, it continues: ‘Scientists Under Siege. Doctors are facing death threats simply for suggesting ME, the chronic fatigue illness, is all in the mind.’
I do not read this article when it first appears. I am still too raw and vulnerable, and the idea of being so closely associated with murderous loons does not appeal, so I file the magazine away for another, indeterminate time.
Eventually, a year later, I get around to it. It is bewildering st
uff, focusing on a hardcore element of purported sufferers – no more than 50 to 80 nationwide, by all accounts, and purported because the article asserted that some were believed not to have any condition at all but merely an inexplicable axe to grind – motivated to commit hate campaigns because the field of science had deemed ME a psychological problem rather than one caused by a virus. These 50 to 80, and quite possibly many thousands besides, believe instead that it is viral, that you catch it via glandular fever or a persistent flu. They are convinced it is similar to HIV (‘the hidden AIDS’, they call it). It is spread by infection.
From what I have come to understand of the condition, this seems unlikely, but a medical paper from 2009 was cited suggesting that a retrovirus called XMRV had been identified in more than two thirds of ME patients tested. Proof? Actually, no. The paper’s findings were subsequently deemed unreliable, impossible to substantiate, but this seemed not to matter to the hardcore, or else was easy to ignore, and so they raged on. The core gripe is this: we are being overlooked by the NHS. The condition is not being given its due attention, much less sufficient funding. How, then, can we find a cure without the necessary funding?
And so they are angry. And even though many of their lives are blighted by the physical and mental exhaustion typical of the condition, they do manage to summon up rather impressive reserves of energy necessary to wage really quite sinister campaigns of the kind more normally associated with radical anti-abortionists in Bible Belt America.
Several prominent UK doctors received death threats; one had had a panic button installed in his house as a precaution. The Sunday Times article was unable to quote any of the hardcore because the hardcore don’t have much faith in a sympathetic ear from the mainstream press. It did quote one campaigner, though, a former vet convinced he had caught ME ‘through having sex with his girlfriend in the early 1990s. He was struck off by the British Veterinary Association after inadvertently killing a cat, and was convicted of indecent assault on a 12-year-old girl in 2004 – both incidents precipitated, he says, by a combination of ME and the heavy drinking he fell into in an effort to self-medicate.’