In Which I Learn More About Chronic Fatigue Syndrome

This year has not been good for chronic fatigue; I’ve been low in energy for most of it, apart from a brief spell over the summer during which I crammed in as much writing as I could, probably not the wisest idea. About three weeks ago, I was so annoyed by this extended period of low quality health that I started looking about on the internet for information. I hadn’t done this in a long while and it occurred to me that research might have moved on.

I was, in fact, surprised, shocked and motivated by what I found out. The information I’m about to pass on comes from two main places: the website of Dr Sue Myhill who seems to have devoted her research to CFS, and the Optimum Health Clinic, who have been dealing solely with CFS/ME/Fibromyalgia sufferers since 2004.

Both places argue that chronic fatigue syndrome is caused by mitochondrial failure. If we compare the body to a car engine, ‘mitochondria are the engines of our cells – they supply the energy necessary for all cellular processes to take place’. Whilst we might have all kinds of different cells, they all gain energy by the same means: the supply of ATP (adenosine triphosphate). As we use energy, ATP converts to ADP and back again, but when we stress the body, demanding more energy than we are creating, this convertion happens faster than we can recycle ADP back into ATP. So ADP builds up and converts to AMP – a ‘metabolic disaster’, because it is lost in urine. So, our ATP levels drop, meaning energy is supplied more and more slowly, and now the body is struggling to create new ATP, a very slow and complex process.

It’s one of those great corporeal wobbles; once the body is out of balance, it’s difficult to get back on track again, and since all our cells are running on low speed, we clock up other forms of damage to the body: our immune systems are poor, hormone production is compromised, brain function suffers. Essentially, the heart (which is nothing more than a big muscle) is impaired, which is why CFSers really badly want to lie down. Standing up, we may be in borderline heart and organ failure. But the problem doesn’t show up on an ECG. I remember reading on a website several years ago that ‘fatigue’ is so much the wrong word for what we are feeling, and that ‘prostration’ would be better. CFSers feel so ill they are prostrated, and this is why; the imperative to protect our heart function is overwhelming.

It’s serious stuff this, and more problematic because the way medical authorities have treated CFS has not been helpful. Graded exercise and anti-depressants have no impact whatsoever on the root cause. What does make a difference? Well, you’ve got to cure your mitochondrial function, which means most importantly, not to make more energetic demands on the body than it can cope with. You’ve got to live at the level of ATP you are managing to produce. Then you need to sleep really well, and eat really well and supplement any deficiencies in magnesium, B3, B12, Co-enzyme Q10, and acetyl L-carnitine. Detox helps, oh and by now you’ll probably have a host of other issues in your liver, immune system, hormone glands and digestion that also need fixing. All of which will challenge your ability to eat and sleep well, never mind anything else. It’s hard to know where to begin.

I have to say this chimes perfectly with my experience.

And when we do finally get back to better health again, the chances are that we will trip our systems once more. The clinic (which supplied me with a very informative brochure) argues that CFS comes about as a combination of physical weakness with personality type. There are four personality types pre-disposed to CFS because of their tendency to maladaptive stress response – a bodily ‘high alert’ in the face of chronic stress. They are ‘helper’ types, who put the needs of others above their own, ‘achiever’ types, who push themselves and are perfectionists, anxiety types, which is self-explanatory, and finally those who have experienced trauma. Oh good news! I tick ALL FOUR boxes. And the experience of CFS itself tends to exacerbate the high alert response that causes all the trouble. The whole thing is like a big vicious circle.

Let’s talk briefly about adrenal glands. Adrenaline has obvious functions in stress, sport and all sorts of performing, but it’s essential every day. Adrenaline gets you through when a busy day is followed by an evening event. Adrenaline also acts as a buffer to anything that’s in the least stressful – which is why CFSers jump a mile when the telephone rings. Without enough adrenaline in our systems we end up hypersensitised, everything is much more stressful to do, and has a greater impact. And if you have properly fried your adrenals, it takes on average TWO years to heal them.

So, you might be wondering how I felt, as someone who’s had CFS on and off, mostly on, for the past 18 years. I felt: YIKES. I felt it was time to get myself in order. I suppose I have always been persuaded by the idea that CFS was no big deal, that it was a silliness on my part, my own fault for being a stressy sort of person, and that I really needed to keep working whenever I could. But to think I am doing long-term damage to my cells is not comfortable. Mitochondrial production goes down with age – I have effectively aged my body too fast. It’s a scary thought. And what about my poor toasted adrenal glands? No wonder I’m anxious about ordinary things; I’m wringing those poor old glands and barely a drop of adrenaline comes out.

I told all of this to my reiki practitioner, who has a wonderfully pithy way of summing things up. ‘So do you understand now that you are not weak or oversensitive, but there is a biochemical basis to your illness that has to be healed?’ Well, I said, if you put it like that. ‘And are you able to forgive yourself for not meeting your impossibly high, fear-fuelled standards?’ she continued. Hmm, trickier. I only like myself as a helper and an achiever. Now they tell me I have to be selfish, underachieving and calm about it?

When I was discussing this with Mr Litlove, the cat barged through the door, flopped down between us with his paws up for some fussing, and then fixed us with the deathstare that says: you’ve got hands, don’t you? Why aren’t you putting food in my bowl? ‘There’s your role model,’ said Mr Litlove.

So I have to live like a cat. Well, a cat that can read and cook, at any rate. We’ll see how that goes.


The Rest Of What We Did On Holiday

So, I had a week to amuse myself while Mr Litlove made his chair. This year we both became members of the National Trust and I was keen to get some use out of my card, especially in order to visit more gardens. I am completely rubbish when it comes to identifying trees and plants and birds and I suppose I thought that visiting gardens would bring me the knowledge by a mysterious process of osmosis.

Getting in my car for my first visit, I realised it was a long time since I’d had to drive myself somewhere new, and I don’t have a satnav. Instead, I’d studied the maps and tried to commit the route to memory, something I was a little concerned about, given that these days I barely make it halfway up the stairs before realising I’ve forgotten what I’m going up them for. But I found my way just fine to Petworth House, an imposing stately home set in vast grounds designed by Capability Brown where the novelist John Wyndham lived (and his son, Max, still does).

What I didn’t realise was that I would undertake solo sightseeing as if I were a Marine commando on a mission against the clock. Memorise maps. Check! Drive to location. Check! Get map of house and grounds from National Trust lady. Check! Three times whilst said National Trust lady was trying to explain which path I should take to the house and what time the tea rooms closed, I rather thought she’d finished (prematurely) and made to take off on my mission. Eventually she asked me somewhat drily, ‘Are you in a hurry?’ and I said, no, no, sorry, just umm… And then I shot off into the grounds as if Big Chief I-Spy himself were in hot pursuit, waving his little tomahawk with menace.

After the glories of Parham, I found Petworth rather disappointing. It was a series of large, empty rooms, their walls thickly coated with paintings that were often hung too high or in strange shafts of light that made them hard to see properly. The paintwork in every room was in desperate need of refreshment and the whole place had a dingy aspect. There was plenty that was spectacular to see – you want a Turner? here’s five in a row. You like portraits of society beauties? Here’s a gallery entirely dedicated to them. You like wood carving? Here’s a room the size of a tennis court, with walls sprouting strange excrescences like a rampant if morbid form of fungi. The part of the house I admired most was the chapel, built in but sunk down a flight of steps, meaning you paused on the threshold at eye level with the scary pictures of saints and angels. It had a shivery power, inhabited by a vengeful god with a connoisseur’s eye for art.

At the end of the corridor that led past the great kitchen (where I doubtless slaved in a past life) and the shop and tea room, there was an entrance into the small town of Petworth itself, quaint and fairy tale-ish, its narrow cobbled streets built on a steep slope. And here I struck gold – the only book shop I found during the whole week, but the most delightful indie packed with excellent stock. I could have bought up the entire non-fiction section, but even I think I have a lot of books to read at the moment. So I made a concerted effort at restraint which I naturally regretted for the rest of the holiday. I bought Diana Souhami’s Murder at Wrotham Hill, a narrative non-fiction account of a crime that took place in the 40s, and James Wood’s short collection of literary essays, The Nearest Thing To Life. I spent longer in the shop than I did in the house and grounds.

The next day I had another stab at sightseeing, this time visiting Nymans and remembering to take the camera. It was a properly hot day and it took a while to get there, half an hour or so, a journey that began to seem to me like an awful lot of bother just to go look at a garden. I do realise I am not naturally gifted with the instincts of a tourist. Still it was a very pretty garden, and I saw it when the rhodedendrons (one of the few shrubs I can identify) were in flower.


I have a photo of much bigger specimens but it came out blurry! This was obviously the rhodedendron nursery.

Nymans itself was a much smaller place than either Parham or Petworth, and not many rooms were open. As we entered the hallway, the sound of piano playing floated on the dusty air, and there in the main drawing room was a little old hunchbacked lady, surely in her 90s, playing her heart out. It was both atmospheric and disconcerting. Inside the house it was like visiting your posh Granny, rather lovely portraits and small sculptures in niches, great quantities of chintz, tartan curtains, piles of books and magazines, a little too much furniture, cold slate floors but cosy throws and cushions.

IMG_2403Part of the house was a ruin, destroyed by a fire in 1947.

IMG_2406Outside the gardens were amazing, even I could understand that much. There were all sorts of features, a sunken garden, a rock garden, a long pergola, a rose garden (not yet in bloom), all sorts of outdoor rooms created cleverly.

IMG_2398I speed-walked my way around lots and lots of plants. Goodness knows what they were.


By judicious hanging around in the shop I managed to stretch my visit out to an hour and a half. I mean, I’d looked, it was lovely, what else was there to do? Mr Litlove asked me which parts of the houses I was most interested in and would most like to take home, and I said, the stories. The history of the houses does really interest me, but Nymans had to remain a mystery, as the guidebook the NT produces was out of print and they were trying to persuade the publisher to bring it back. I bought Patrick Barkham’s book Coastlines in lieu of it, even though there was no coastline in sight.

So Thursday it rained all day, and Friday was our last, and the one I had to vacate our cottage since it was a Friday-Friday let.  On our last holiday, I’d struggled under similar circumstances, waiting all day for our journey home and then too anxious to undertake it. So this year, we booked a hotel for Friday night, so I wouldn’t have to face the M25 on its worst time of the week. And yet, still I woke that morning full of anxiety. The owners of our cottage had kindly invited me to spend some of the day with them, which I did. And then late morning I drove out to Arundel for something to do (enormous castle on a hill, its petticoats full of tea rooms), and then I drove to Mr Litlove’s workshop for the afternoon. I was very tired and very anxious by now, though the workshop was fun in its way and I was glad to visit. Anyway, to cut a long story short I was pretty much gripped by anxiety until we were finally home early on Saturday (very early, I wasn’t sleeping anyhow so we thought we might as well do the drive).

What had gone wrong? I’d been fine all week. When I saw my reiki practitioner a few days later, she suggested it was a ‘safe place’ issue, and the light dawned. Most of you fortunate, normal people out there probably carry your safe place around inside you. Perhaps what distinguishes the phobic and the anxious is that our defences feel insufficient, and some other, physical, form of protection is required to reach basic safety levels. I was okay using the holiday home as a temporary base, but stuck in limbo on Friday my anxiety began to rise. And as anyone who suffers anxiety knows, it’s all too easy to reach the point of no return. Still, you live and learn, particularly when you have a preternaturally insightful reiki practitioner. And we did have a lovely week.

The Unexpected Pleasure of a Social Fail

Last week I was invited to a publisher’s event in London and despite my terrible track record at attending such things, I decided I would go. There are plenty of reasons why I hardly ever attend, beyond my chronic fatigue. They all seem to start at 6.30 p.m., for instance, which is a dreadful time if you are a creature of habit and like to eat regularly. To arrive in good time, I need to leave my house about half past four, which is too early for tea beforehand, and then if one stays to the bitter end at 8.30, this means eating dinner at home around 10.30 p.m. which is even past my bedtime. Obviously other people find their way around this, but I admit it perplexes me.

Anyhoo, I boarded the train with my emergency supplies of a Marks & Spencer wrap, made it to London and walked to the venue which was just off Charing Cross Road. I visited the new Foyles as I had a a little time to spare, and found it very spiffy to look at, but a tad confusing in layout. Mind you, it’s definitely a step up from arranging books by publishers. Then I walked to the venue, eating half the wrap as I went (and trying not to drop lettuce into the folds of my scarf) and still arrived a bit early. I cased the joint, as the old gumshoes used to say, from the other side of the street, and saw people going in. At the door there was a young woman with a clipboard taking names, and I feared things were not going to go well when she could not find my name although I had written to rsvp. I had my invitation printed out in my bag, but it seemed she didn’t want to challenge me, just hastily added me to the bottom of her list and waved me on to coat check. The people in front were having their coats taken, and when that young woman never returned, I thought it wouldn’t hurt to keep my coat with me, which was a good decision in the end.

I sat in one of the alcoves in the bar, watching London publishing people arrive and flicking through the publicity brochure. This is when I realised I had made a mistake in not checking beforehand whether any other bloggers were going to attend. I’d been so sure somebody would be there who I knew, but as jolly partygoers poured in, I realised there was no face I recognised. They all knew each other though. They were doing that social clumping thing, where they separate into little, dense groups of furiously chatting people. When I finally saw a face that was familiar it took me a while to place it. Then I fervently hoped I hadn’t been staring. I think it was the owner of a book store who I met several years ago now, offering to create content for a website for the shop. This person was dead set against any idea of a website and we parted company less than pleased with one another. Yikes.

Well, half an hour had passed and I was very bored, and nothing seemed to be happening and I really had no desire to talk to the only person who might know me. And so I put my coat back on, slipped through the crowds in the room, and left without anyone noticing. Then I walked back to the station, got on the train and ate the other half of my wrap for dessert. It was one of those sleepy trains with the final few commuters of the evening all happy to nap in their seats or read. Across the aisle from where I was sitting an Indian gentleman slept through the first half of the journey and then when he woke up, he took a book from his bag. Inevitably I craned my neck to read the title and was intrigued when I saw it was a memoir by Michael Greenberg called Hurry Down Sunshine about a severe breakdown his daughter suffered. I’ve had it on my shelves for a couple of years without having read it yet (same old story!). Well, the gentleman saw me looking and smiled, and I smiled back at him and it was clear we both were on the brink of saying something but were a little too reserved. Ten minutes later, as the announcer said we were arriving home, and we were all shifting and leaning forward in our seats, we just started chatting (he was enjoying the memoir, though it was very sad, so maybe enjoy was not quite the right verb). And I had my bookish conversation after all.

When I told this story to Mr Litlove with the stated intention of blogging about it, he wasn’t sure I should mention it. I think this is because Mr Litlove is an alpha social animal, who would never be intimidated by a room of strangers and would find an easy, natural way to enter a conversation other people were holding. I do admire him for that. But that’s not me. I dislike parties, and travelling, and I fear being stuck in social situations I’m not enjoying. I was quite pleased that I took the decision to leave and to conserve my energy which is still in short supply and precious to me.

And it’s very intriguing why I should have found it easy to talk to the stranger on the train and impossible to talk to the strangers at the party. All I can say is that the train felt like a level playing field, socially. At the party, the people there knew each other already and I was at a disadvantage. And on the train, we had made a connection over the book; it was a tiny thing, barely perceptible, but it made all the difference. Something real had occurred, and the real is always simple to capitalise upon. When the connection is artificial, you have to work so much harder.

In case you’re interested, I had a bowl of cereal when I got home, to round off my nutritionally impoverished evening and I still managed to come down with a chronic fatigue relapse a few days later, which goes to show that evenings in London are probably still beyond me physically as well as socially.* But the experiment was interesting in all kinds of unexpected ways.


* And yes, Dark Puss, you are top of my list for when I am able to spend a bit more time in London!

Chronic Fatigue Gets A New Name

So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’

I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the third, and running dangerously on empty from the fifth onwards, knowing I was just going to feel sicker and sicker and trying to manage the panic about that.

The harder you try to push through the fatigue and the illness and keep going, the worse it will all be when you finally stop. In fact the worse it is day in day out. I always thought that if it was only tiredness I felt, that really wouldn’t be a problem. The difficult part is that you feel extremely ill. There’ll be symptoms – nausea, headaches, general aches and pains, sore throats, dizziness, all that sort of thing – but the hard part to deal with is a kind of essence of all illness. You lose control of your temperature, your heart rate, your blood pressure. All of these experiences are invisible. The habitual words do not convey the reality of the feelings. No one will understand.

When I finally came off work, the suggestion from medics was that I try ‘pacing’. I began with no more than one hour’s activity a day, and would stick to that for a week. If all went well, then the following week I could increase my activity by five minutes. And again if all went well, five minutes more the week after that, and so on and so forth. There would be relapses. I remember several years ago, Mr Litlove and I were on a beginners’ tango course. This was a big ask for me – three hour sessions every weekend. Towards the end it was becoming too much and I intended to miss a session. My mother-in-law, who had been visiting, couldn’t understand it – I didn’t want to miss out, did I? If I was tired the next day I could just sleep in. Of course healthy people think this way. For me, I knew that completing the session would mean three days or so in bed, followed by a long, slow, increase of activity afterwards. And it’s hard to enjoy things when you are aware how expensive they are going to be.

I still think of energy as money. Some activities are a lot more expensive than others – for me, socialising, travel and stress are the most costly (this differs from person to person). But everything costs a little – being excited about something is as energetically demanding as being anxious. Laughing takes energy. Engaging in an intellectual activity doesn’t come cheap. Television is more expensive than a book. I have an expensive personality – my normal demeanour is bright, cheerful, engaged. Even being myself was more than I could afford some days, and of course the sense of outrage and unacceptability is so overwhelming when you cannot even behave like your own self that you (I) tend to push through regardless, out of frustration and stubbornness, and build up a large debt that then takes forever to repay.

Doctors have long wanted to push for depression as a key part of chronic fatigue, but I think that’s putting the cart before the horses. It’s hard to stay positive sometimes when you have an illness that is like a punishment for living. And inevitably, the sort of mindset you need to get better – calculating all the time what amount of exertion you can afford, always playing it safe, shying away from anything demanding – affects your confidence over time. Doing something new, or something you haven’t done in a while, can be frightening when you have no idea how you will feel afterwards.

I write about chronic fatigue for two reasons. The first is to raise consciousness, because it is still such a misunderstood and stigmatised condition. I’ve had a lot of time to think about it, and I’m motivated to find ways to express the reality of living with it. The second reason is that for a long time, I felt terribly ashamed of myself. I thought it was my fault. I didn’t want to confess to all the things I couldn’t do without severe consequences. I hated not being able to live like a normal person. But you know what? Denial is a very expensive habit, and I came to realise it was far better for me to accept the condition, to understand it was part of me, like it or not. And it still is a part of me. The past eighteen months have been a very stressful time for me and my family, and for most of it I kept up a reasonable level of activity. This was encouraging – I thought I was seeing the back of chronic fatigue. But then when things finally calmed down towards the middle of November, I felt the familiar old exhaustion. In December I caught every bug going, every time I tried to raise my level of activity even a little. I resigned myself to more of the same in January. This month, I’ve felt more like myself, but I have to calculate my energy every day and make decisions accordingly (hence minimal blogging for which I apologise).

But even the experiences that take the most away, do give something valuable back despite themselves. If there’s one thing this condition has taught me, it is the resilience of the human spirit. Since 1997 I’ve been on a wild cycle of ups and downs, but no matter how low I have been brought, I have always risen back to the surface. There has always been a return of energy, a renewal of appetite, an improvement in my overall wellbeing. And each time that happens, I have felt acutely, exquisitely, how precious life is. I live a very quiet, peaceful life, but living quietly and peacefully with much time for contemplation turns out to be something I cherish and for which I am profoundly grateful. Not many people have the luxurious time and space that I do for observation and for thought. The blessings only come from accepting the truth of the situation, and that can be hard with a condition that is so poorly understood. In the absence of a cure, perhaps a new name (however awkward!) will help the healthy and the sick understand what’s at stake, and deal with it better.