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.



36 thoughts on “In Which I Learn More About Chronic Fatigue Syndrome

  1. The ATP theory, which makes a lot of sense to me, came up in a book I worked on, which also had some good stuff about chronic pain feedback loops. I’m revisiting some of these ideas myself, as exhaustion and bizarro reactions to food keep plaguing me, although I can never tell whether anyone my age would be tired out by working 80 hours a week and having no real recreation (in the literal sense of re-creation). I do know for sure that if I have a spare hour—and sometimes even if I don’t—I will absolutely fall asleep. This strikes me as a ridiculous way to live, but oh well.

    • I suppose reading all this stuff stopped me from feeling ‘oh well’ about it. I feel responsible for myself, and if I’m not obedient to my body then I won’t get better. Simple as that. I seriously do not want to do myself long term damage, and the key here seems to me to be adaptation. I know I have a high stress response, a mix of past experience and, it now seems, poor adrenal function. It’s time to take steps to lower that stress response, which means I need to have the moral backbone to change. For me, I have to learn how to not mind being in trouble – that’s what keeps me over-reaching myself. I hate the thought of disappointing people or not doing what’s expected of me, or spoiling other’s experiences. Which is ridiculous really as I expect I’ve done all of that and more over the past decade. So, time to grow up, get real, and live with fewer expectations of myself.

  2. It sounds very similar to Lyme Disease, which I have. There’s no cure or much medical help for that either. I give myself permission to take time off life when I need to. I hope you can manage to do this too.

    • I’m fortunate at the moment in that I can take a lot of time off – in an ideal world, I’d use this towards a real, lasting cure! I am so sorry to hear about Lyme disease – how horrible for you. I send all my sympathy!

  3. Goodness, this rings bells with me as someone whose energy levels are on the floor, induced by the factors you write about. Thank you for expressing the problem so clearly, and all the very best to you (to us all indeed) in tackling it.

    • And the very best to you – I send bucketloads of sympathy. It is terrible being without energy because you can’t do a thing and it’s hard to explain to healthy people quite how restrictive and destructive that is.

  4. “Everybody wants to be a cat.” Not everybody has such a good reason…I think you should try to enjoy it! It should be easier to put yourself first more often now that your son is so grown up.

    • Ha, yes, well, if we discount 2013 when I was probably the most stressed and worried about him I’d ever been and he was not where I could see him and do something helpful, then yes, having him grown up does release much more energy and time. I need to practice worrying less, too, quite evidently! My cat certainly knows how to do this and is probably ready to give me tips… You’re quite right that indolence really should be enjoyed.

  5. Oh my goodness. How clear you are and how vile CFS is.

    This is only tangentially related but I remember my therapist’s words when I was afraid to start saying no to (at least) a couple of ‘friends’ whom I’d frequently helped (or, in my case, prostrated myself beneath). She said, ‘What do they do for you?’

    I couldn’t think of a thing. It was salutary.

    So I plucked up my courage and started to say no to the things I’d always said yes to before, things that only benefited them and, after a while, they stopped asking for ‘help’. I felt cold, vile, unkind, cruel (add any other unpleasant adjectives you can think of) but I got my own life back. And, after a while, the sense that I was being cold, vile, cruel etc., left. For good.

    According to Chinese astrology I am a cat. I recommend living like one that can read and perhaps Mr Litlove – if he doesn’t already – could go halves with you on the cooking.

    • I do think that saying ‘no’ is much more powerful than saying yes – which is probably one reason why I get afraid of doing it! And absolutely, I know I try to avoid that feeling you express so well of being cold and unkind and disloyal. I am very heartened to know that it can go away completely and never come back! I think I probably need to start applying your methods to things I think I should do – I often overburden myself with chores, and with perfectionist groundwork for chores, and it’s a good question what I get back from doing them! Definitely something to think about.

  6. Wow! That’s really something heavy to have to deal with – and I’m not sure if knowing all the science makes it easier or harder to handle. You have my positive thoughtwaves winging your way, and I hope you can learn to become a feline….

    • Thank you – I’ve thought about this illness A LOT over the years and know it very well, so when I first read up on this it was just a relief to think that my instincts had been mostly correct and I hadn’t done anything too wrong – except, quite possibly, never giving myself enough time. I start (albeit at a low level) back to doing things asap almost on a daily basis and I can see that taking it easier for longer would be a good idea. You’re right that sometimes it can seem frightening, but on the whole, the unknown and poorly understood is worse. I’m practising my cat moves! 🙂

  7. So many resonances here, from the length of time living with CFS to the personality characteristics you identify. it has taken that time together with therapy more recently to allow myself not to be a perfectionist. For me an enormous stumbling block was pretending generally that I was OK to almost everyone except my own poor spouse.
    Your thoughts here have been such a welcome, helpful injection of empathy and encouragement. I always read your work with a sense of awe that you can achieve all that you do while battling the fatigue monster. And I will take another look at the Myhill research.

    My own animal inspiration comes from my daughter’s Cavoodle who is so consistently hope filled, enthusiastic and completely in the moment . Can I picture you curled up happily in a sunny spot oblivious to any care?

    • Oh the pretending! I am so glad to know it’s not just me. My Phd student and I used to joke that his last words would be ‘I’ll be back!’ and mine would be ‘I’m fine!’. I don’t know, it’s all just so instinctive. I try and tell anyone who has come to visit me exactly how I’m feeling (bet they love that) as early in the conversation as possible to try and stop myself from too much dissembling, but even so…. Thank you so much for your kind, lovely comment. And the thought of the Cavoodle is delightful. I especially like the word ‘oblivious’. I think I should find a mantra with that in very soon!

  8. I often wonder if you are OK when you haven’t posted for a while. (Don’t take this as a message that you should post when you don’t want to.) Sorry to hear it’s been tough for you recently.
    Your approach sounds very sensible.
    I do think that simply by *being*, you must bring lots of happiness to your family and friends around you, and the things that you *do* or don’t do are a secondary factor. You seem to be one of the nicest beings I know, the way you are generous spirited and the way you are so receptive to others in their thoughts and opinions.

  9. I really do like the idea that being cat-like is possibly part of the solution. A three- legged cat lives over the road from me and he simply shouts when he wants food, company and so on. I just love him.

    • Yes, there’s something rather admirable in that simplicity – just shout for what you want and then be glad when you’ve got it. Got to hand it to cats! Perhaps this is why they feel superior to dogs, who are much more existentially anxious?

  10. Some of us have made the transition to cat that reads, cooks and practices some physics on the side 🙂 I am very lucky in that although also ticking some of those boxes I have never suffered in any way from “chronic fatigue”. I am absolutely convinced that some level of selfishness (perhaps it would help if you call it self-preservation) is essential in any healthy person’s life; frankly we should be promoting that as well as all the apparently positive traits such as helping others, self-sacrifice etc.

    If you would like to sit at the paws of a master feline I am (as always) at your disposal. P xx

    • I think ‘self-preservation’ is a very good term. I like that. I’d like to see my cat do a bit of physics, though, or maths. Still, he thinks he’s perfect as he is and doesn’t need any further embellishment – which is the level of self-belief I need to aim for! 🙂

  11. It’s not a question of being selfish or selfless, it’s a question of striking a balance. Despite what many would have us believe, being nice to other people is one of the great pleasures in life; it’s only when we constantly tear ourselves apart for the occasional, forgiveable lapse that it’s a real problem. Don’t go so far down the road of looking after number one that you lose the ability to love, because that is the greatest loss of all.
    I was never diagnosed with CFS, but for 6 or 7 years I had recurrent symptoms of overwhelming tiredness, muscle fatigue and stomach cramp. It worsened after I had had a cold, which makes me think that there is something in the suggested, but unverified link between CFS and the immune system.
    My doctor told me, as if reading from a script, that I was “just tired”. I knew I wasn’t; when I saw him I’d felt totally worn out for 3 months; I forced myself into work but it was a struggle. Over the years, the symptoms gradually got less frequent. Oddly, they more or less stopped when, one day, I had to get up to go on holiday at about 5am in the morning. I felt like **** but because I had to meet a friend at the airport I said to myself, “You have to snap out of this, there is no alternative”, and immediately it went away. It was strange. I’m not suggesting this means anything (and I’ve had other health problems since then), but it made me think about the role that expectation of repetition of the past plays in our lives.
    That’s probably a load of baloney but I thought I’d add my tuppence worth 🙂

  12. No, not at all. I had a revelation one day that at least part of chronic fatigue was trauma-related, in that the experience of the original illness was somewhat traumatic for me, and so every time I felt ill I was instantly afraid it was ‘happening again’. That did help me a lot – I found I could recover more quickly from small episodes after that. The problem with such revelations is that they tend to get entwined with awkward reality. I thought I had recovered almost entirely from CFS a few years back and then we’ve had a series of extremely stressful years that seem to have given me a recurrence of it. So it has happened again – though not as badly as it did in the first place, I’m relieved to say. And it’s okay; I can give up a lot of excess fretting and still remain a people pleaser – at 46 I’m not about to change that much!

    I’m so very glad to hear that you have recovered completely from your fatigue; it is always heartening to hear such stories.

  13. Very interesting to read about new theories of CFS and of course to hear about your progress. It must be so frustrating but you seem to tackle it with a mix of curiosity, humour and perseverance. The reiki sounds wonderful. I hope the cat philosophy of life has you purring again soon. 🙂

  14. How marvelous that you found such useful information! Mmm, living like a cat sounds lovely–lazy afternoons sleeping in sunbeams, doing what you want when you want and for how long you want, walking on the counter tops you know you are not allowed on, cramming yourself proudly into ridiculously small boxes. I wish you all the best. Just be careful and don’t get your tail caught in a door 😉

  15. I’ve had so many similar symptoms for years but before I read your posts on Chronique Fatigue it never occurred to me that might have been what I had. I’m over it though because a very empathic soul found out that I was a trauma victim. Trying to be strong and cover it all up made me oversee that very important point. I don’t have bouts of fatigue anymore but I need to be very cautious.
    I hope you develop your feline nature and get out of this. 🙂

  16. Your posts about CFS are always so wonderfully helpful. I’d never heard of this, nor had my partner, K, who has also suffered from it for about the same length of time as you have. I’m going to pass this on to him, thank you so much.

    Live more like a cat is a great philosophy. I was only looking at Clara yesterday, sleeping peacefully on my bed while I grappled with a lesson plan which wasn’t going too well, and feeling distinct envy… Good luck with living by it!

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