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.


Mr Litlove And The X(chromosome)-Files

Mr Litlove had his minor eye operation last week, and it all went off just fine. For the week or so before it took place, whenever he wanted sympathy, he’d put one hand over his eye and present a trembly bottom lip. This was effective enough in itself. When he did emerge from the eye clinic, the miracle that is laser surgery meant that he didn’t even have an eye patch. And yet….the drugs they had given him to enlarge his pupils were pretty potent and with his ears a little downturned from the general unpleasantness of hospitals, he looked exactly like Puss-in-Boots from Shrek.

puss in boots

Love me! Something BAD just happened.

For the rest of that day and most of the next, the only real side effect was the difficulty he had with bright light, not surprising with pupils the size of gobstoppers. But good news! He could still watch television.

I was a little…unnerved, however, to see him heading past me later that first afternoon with the DVD of the Sex in the City movie. As one of my friends once remarked, he is very keen on his alpha male stereotypes and not what you might call a bridge brain.

‘You’re going to watch Sex in the City?’ I asked.

‘Well you enjoyed it,’ he replied.

And I had to admit I thought: this should be interesting.

A little later, when I’d finished some work I was doing, I went through to see how he was getting on. He’d reached the part where Carrie Bradshaw gives a Christmas present to her assistant of a real Louis Vuitton handbag and she practically squeals the place down.

‘This is getting surreal,’ said Mr Litlove. (Ha! I thought) ‘That is the ugliest bag I’ve ever seen.’ (Not surprising; he has strong opinions about women’s clothing, for instance, he thinks Ugg boots are particularly aptly named.) ‘Look at it, it wouldn’t go with anything!’ (Okay, that was more metrosexual of him than I’d expected.)

I settled down to watch for a while, and tried to wipe tears away discreetly. But I really did have other things I should be doing. So I said I’d leave him to it.

‘We can’t be far off the end,’ he said.

‘There’s quite a bit more to go.’

He shook his head in disbelief. ‘It’s amazing how they can make such a long film in which nothing happens!’

Nothing happens? Carrie gets jilted at the alter, Miranda splits up with Steve and reconciles with him, Charlotte gets pregnant, Samantha does a whole host of Samantha-type things, there are fashion shows and holidays abroad and a lot of angsting over emotional intelligence-based life decisions, but, no, nothing happens. Several more hours passed before I saw him again.

‘So what did you think of the film?’

‘At the end?’ said Mr Litlove. ‘When Carrie and Big make up in that walk-in closet he’s supposed to have built for her?’


‘I just couldn’t understand how he’d got it out of the space. He must have bought the next door apartment, too, and knocked a wall down.’

On the whole it was much as I expected; he could have used subtitles. Well, life moved on and I thought no more about it, would have forgotten it entirely except that the next day, as I passed the television and Mr Litlove in front of it, a familiar face caught my eye. I looked again. Yes, it was Kirsten Stewart….in the snow…and wasn’t that boy supposed to be a werewolf?

‘Is that really one of the Twilight sequels you’re watching?’

Mr Litlove started guiltily. ‘I was just curious,’ he said.

How curious?’

For a little while I got quite excited about the potential storyline: man goes into hospital for routine eye operation, but emerges with a whole new gender perspective. You could sell it as The Snow Queen meets What Women Want. But after that there were no further cinematic surprises. Whenever I walked past the television, there were men shooting each other on it, or comedy panel shows.

Yesterday evening, Mr Litlove asked me if I had a topic for a blog post yet. Since I am ethically committed to warnings, I said, ‘Yes, you.’ He winced. ‘Now don’t be like that,’ I said. ‘Your loyal fans love hearing about your exploits, and I thought I’d tell them about the weekend of chick flicks.’

‘That just showed how low I was,’ Mr Litlove replied, gruffly.

And yet, I’m not entirely convinced. Mr Litlove was wearing his rowing gear, as he’s been competing all this week in the town ‘bumps’. Having caught up with the boat in front of them on the course and bumped, he was wearing the traditional branch of willow. But he hadn’t just stuffed it down the back of his shirt, he’d twisted it into a delightful laurel wreath, and being Mr Litlove, he’d managed to make the leaves particularly perky.

Maybe he’d learned a little something, after all.



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.

We Prepare For A Holiday

Yes, the blue moon must have been glimpsed in the sky because Mr Litlove and I are going on holiday again. He is doing another chair making course, this time in a workshop on the edge of the Sussex Downs, and I will be going along for the ride with a box of books. We’re staying in a place called Library Cottage, which should bode well, don’t you think?

In an unexpected twist of fate, the injured member of the party this time is Mr Litlove. Last week he went for a routine eye check up and was sent to the emergency clinic at the hospital. There were some concerns about a thin patch on his retina, though what the upshot of this concern is, we are not entirely sure.

I dropped Mr Litlove off at the clinic at 10.30 in the morning. By 11.30 he had the drops in his eyes to enlarge his pupils and by 12.30 he was finally seen by a doctor. The doctor, however, wasn’t at all sure what she was looking at. ‘I wish your optician had said on the form where the problem is,’ she told him, ‘I can’t see anything wrong.’ Then, having checked the form again, ‘Ah, yes, she did say. Well, the retina’s a big place, you know.’ Once the doctor had located the problem, she still didn’t seem to know what to do with it. Twice she went off searching for a colleague to give a second opinion, and there were no colleagues to be found. ‘Perhaps I should pop you back in the waiting room and see another patient,’ she muttered to herself under her breath, while examining him again. Did she think his condition might deteriorate to the point of certainty within the next half hour? Or was he going to stay there indefinitely?

Towards two o’clock they let him go. The doctor decided he should come back for some treatment and told whoever it is who keeps the appointments diary that it had to be within a fortnight. ‘I’m actually going on holiday the week after next,’ Mr Litlove confessed. And of course there was no appointment to be had in the week ahead. The consultant four doors down was consulted and the message came back, ‘He’s fine, do it when he’s back from holiday.’ The reassurance was nice, Mr Litlove said, and would have been even nicer if the consultant had actually looked at him. But he’s experiencing no symptoms and in fact, he thinks that something similar happened to him four years ago. Only then, the test took place at the opticians and he can’t recall the outcome. Maybe he was supposed to go to the hospital and forgot to make an appointment? Maybe the opticians forgot? But still, if he’s had this for four years at least, it’s unlikely a couple more weeks will make a difference.

When I mentioned this to my mother on the phone, she remembered the same thing happening to my brother. When they next saw each other, she got the full story off of him, and would you believe it, but my brother has been seen twice for thinning of the retina, once 15 years ago, once about four or five years ago. He’s never had any treatment, and hasn’t been able to get out of any doctor how serious this all is. It strikes me as extraordinary, this lack of information that passes between doctor and patient. Why is medical knowledge treated as classified? Is it something to do with doctors being afraid of people sueing them? Or are doctors rarely certain what is going on with a patient?

Sitting in the waiting room without his contact lenses in and thus forced to read his rowing magazine with one eye closed and the paper held an inch from his nose, Mr Litlove said he thought this must be how the NHS runs an efficient service at a low cost. ‘You don’t worry about the patients’ time, but keep them all together so they can be seen when the doctors are ready,’ he said. ‘But your experience wasn’t one of efficiency,’ I told him. ‘How long did the doctor dither over your diagnosis?’ ‘Well I’d rather not have a doctor who is cavalier with my health,’ he replied. ‘I completely agree,’ I said. ‘So wouldn’t it have been good if she could actually have had that second opinion she wanted?’

So, we are going away hoping he’ll be fine, and having been told if he has any strange disturbances of vision we must rush him to the hospital. I have to say I am impressed by my husband’s stoic calm. I do not deal with these sorts of medical issues well. But I’m also quite sure that he’s had whatever he’s had for a long time, just like my brother. I think it’s one of those things that, if you’re unlucky can be problematic, but is most likely not an issue the rest of the time.

Talking of being unlucky, our neighbours who usually feed the cat in our absence are also going away too. So Harvey is headed for the cattery for the first time in his life. It’s an imposition to ask people to come round twice a day to feed him (and even that is a lot less than he’s used to, now he’s an old, querulous, whining cat) but at least we know he can keep his routine and that he’ll be safe if we board him. Harvey has already suffered the great indignity of having to get his shots updated and will not be at all pleased to learn his fate. The other evening, Mr Litlove was checking the cattery out online and was surprised to find they have a facebook page. ‘That’s good,’ he said, ‘Harvey can drop us a line while we’re away, let us know how he’s getting on.’ I could envisage it already: ‘O hai, hoomans. Kamp suks. Git me now.’

And finally, what books am I taking? You’ve been very patient waiting until now to ask. I am taking:

Pleasantville by Attica Locke

Early Warning by Jane Smiley

Alfred Hitchcock by Peter Ackroyd

This Is Not About Me by Janice Galloway

I’m halfway through a thriller that I’ll take too, and then I’ll probably not be able to resist throwing one more book in. I’m thinking either Major Pettigrew’s Last Stand (which I am one of the last remaining people on earth not to have read) or Us by David Nicholls. Have a great week next week, and don’t forget to visit our new Extra Shiny, out on May 14th, debuting our book club with Laline Paull’s The Bees – which is now looking like a controversial choice!