By Camilla Maxted, 06 August 2017.
When it comes to my illness, I've learned to listen to my symptoms, trust my body, and give it the one thing it really needs: rest.
It took 11 medical appointments across 20 weeks of pain and despair before I finally got a diagnosis.
For months, I’d been suffering from exhaustion so extreme that bit by bit, I’d had to let my whole life drop away. For a long time I tried to ignore it – after all, who stops doing anything just because they're tired? – but life became simply impossible. So first I cut down on my activities – like going for a run or seeing my friends – then, as my condition got worse, I cut them out completely. As for my job, I tried working from home, and I tried working half days. But my body just wouldn't play ball, and I had to stop working completely.
The tiredness was on a par with the worst flu you've ever had: Remember trying to drag yourself to the bathroom, or being hungry but barely strong enough to make food? As well as the fatigue, there were all sorts of aches and pains: a soreness in my spine, headaches and heavy limbs.
But this had lasted way longer than any flu. And now, here I was. After many fruitless discussions with GPs and inconclusive tests, I was finally in front of a specialist. He’d been able to put a clear label on my illness: a diagnosis of chronic fatigue syndrome. And he was now telling me that he had a track record of helping patients to recover. I nearly wept at my good fortune.
The doctor gave me an exercise program. “We’ll start small and build up from there,” he told me. “Stick to the routine and you'll see results.” He also said it was important that I stayed positive and didn't get too “lost” in my symptoms. “Try not to give them too much space in your mind, because you run the risk of magnifying them.”
The exercise started at a level I was comfortable with: five minutes of walking each day for the first week. At week two, five minutes became six, and so on. But by week four the nonstop walking had gotten to be too much. Weirdly, I was OK while doing the actual walk itself; it would hit me afterwards and I'd have to lie down, and I'd wake the next day feeling as though I'd run a marathon.
I discussed it with the doctor. “You're deconditioned,” he said. “You've been resting too much. Don't be afraid of exercise – it's good for you.”
I knew this made sense; exercise is good for you, isn't it? Besides, the doctor was a specialist – he'd seen it all before and he was assuring me this was the way to get better.
“I'll keep going,” I said.
“That's the right attitude,” said the doctor. He also reminded me not to dwell on my symptoms.
I didn't think I was dwelling. But when you have to lie down for days on end, it's hard to stay positive and upbeat, and it's hard not to think about the pain you're in. So I carried on walking, and hurting, and trying not to think about the hurting, and walking some more.
By week six, I had fallen behind on the programme and was feeling worse than ever. But the doctor told me that I wasn't trying hard enough. So I kept trying, and I kept paying the penalty. I didn't know what else to do, and it didn't occur to me that a doctor could consistently deny a patient’s reality. I thought maybe if I just tried a little harder, pushed a little further, I could prove the doctor right – and my own body wrong.
Going into week eight, I knew that I needed to stop. But I didn't want to give up. I held on and on to the hope of improvement – I didn't want to let my chance of recovery go. And I didn't want to stop and admit, even though by now it was clear, that not only was I not going to recover this way, but the treatment to which I'd so diligently applied myself had been making me worse.
I didn’t want to admit that, but eventually I had no choice. And when, one morning, I couldn't even make it to the kitchen to make my cup of coffee – let alone shower or dress – it was a relief to let it all go. Relief not simply because I could stop hurting, but because I could stop hurting myself. And with that I could cease the huge mental effort of trying to convince myself, in the face of all evidence, that I had been doing the right thing.
It soon became clear just how much I’d been fooling myself, as the payback for my efforts set in. Even now, even when I’ve experienced that same state of body and mind many times, it’s hard to convey what it’s like to be that sick. Hard to convey the crushing weight on my chest and limbs. Hard to convey the soreness, the shivers and the burning, the headaches, the other aches; the inability to concentrate on anything other than the feeling that every atom of my being was somehow spewing poison.
For several weeks, I was too sick to make it to the clinic, so my last conversation with the doctor was by telephone. And he didn’t seem particularly surprised or concerned to hear I’d decided not to return in person.
“I really urge you to have another go at some point,” were his parting words, as though it was simply a matter of my mustering the motivation. “That is,” he added, “if you really do want to get better.”
I hung up with the impression that, contrary to what I'd been told at the start, failures weren't so uncommon. I felt I was being shunted off the books, like a low-achieving pupil being excluded so that the school could maintain its high pass rate.
It turns out that the only thing more scary than developing a life-changing disease is finding that there is no effective help available. Reality drops away from you. Nothing in your previous life carries any weight any longer; nothing can give you strength or sense; all is swallowed into an enormous void, and the void is waiting for you, and it says: You’re on your own, and there is no resisting me.
After the worst phase of physical punishment for my efforts had passed, I also found that I'd lost the little function that I'd had before starting the exercise program. And when you get as bad as I was then, you become unable to advocate for yourself. You can’t leave your bed, and even if you could, you can’t hold a conversation in real time, because your brain won’t process things quickly enough.
There I lay, abandoned by the medical establishment – or had I abandoned it? Either way, I was full of fear, and the self-doubt instilled in me by the doctor remained. Should I try again, at some point? And what was going to become of me?
It was at that point, lost, alone, that I decided to do my own research. Sure, I’d done some light googling before, enough to find out that graded exercise was the only real option open to me (it was either that or cognitive behavioural therapy, designed to persuade me that I should think more positively and get active again – sound familiar?). But now I took a different approach, going beyond the official literature. I joined discussion forums, I started asking questions on social media, and, eventually, I learned to make sense of scientific papers.
As I dug deeper, I found that I wasn't alone in finding the exercise programme damaging. Around the world there were hundreds of thousands – possibly millions – of people stuck in their beds like me, and in the UK a sizeable proportion believed they had been put there by exercise therapy. And the rest of the world kept on spinning, and nobody knew.
From my bed, I learned that chronic fatigue syndrome, or CFS, is sometimes also known as myalgic encephalomyelitis, or ME. And I learned that the history of ME/CFS is a story of people bewildered, in pain, and often severely disabled, and suffering the even greater cruelty of being told their symptoms are only in their mind.
On the internet I met people who had been told they were “sick, not ill”. I met people who had been informed that “you must want to die, then”. (And I spoke to several who at times had felt that death would indeed be preferable.) I read the stories of children who had been removed from their families due to their parents’ refusal to force them to exercise.
I also met – online of course – several sufferers who had lived for months or years in darkness, unable to speak or interact, just strong enough to drink liquidised meals and drag themselves to the bathroom when necessary. But in this darkness I also found hope, support, and a sense of community.
On the scientific side of things, I learned that outside the UK, postexertional malaise, a flu-like delayed response to exertion, is known to be the hallmark of the disease (in fact, the US Institute of Medicine recommended renaming it on this basis). I read studies that showed that people with ME/CFS have restricted cardiovascular ability, and that they experience an overwhelming buildup of lactic acid with exertion.
I learned also that scientists had started to unpick the biological foundations of ME/CFS. Research groups in the US and Norway have now identified the disease as a sort of restricted metabolic state where the body can't manufacture energy in the normal way. No wonder exercise made me and so many others worse.
The science hasn't reached most doctors yet, but it will do. This means that help will, eventually, be on the way. Although there aren't yet any drug treatments for ME/CFS, some approaches have shown early promise.
Am I angry that I was given the wrong advice? Of course. And my heart breaks every time I read another story of how graded exercise put another person with ME/CFS in bed. More than this, though, I'm angry at how needlessly we have suffered. Why was biomedical research not begun earlier? Why were psychiatrists allowed to squash exploration in this field, by taking it and calling it their own? Why, even now, are people being told to undertake exercise programmes without being informed of the risks?
As for me, I am improving slowly, but it will be a long time before I can travel anywhere or work again. I've learned great patience, and even greater compassion for others; I'm truly thankful for that. These are qualities that will stay with me for life, because I have seen the cruelty and the grace of the world that we each experience, and the love that holds it all together.
And when it comes to my illness, I've learned to listen to my symptoms, trust my body, and give it the one thing it really needs: rest.
ME Association Illness Management Report and Recommendations
In October 2015, we published results of the largest patient survey – examining the effects of prescribed illness management – that has ever been produced.
It examined cognitive behavioural therapy (CBT), graded exercise therapy (GET), and Pacing and is available as a free download.
The report contains all of the comments from those who took part, explaining in their own words just how effective these different approaches to management were. Many of the comments about GET are similar to the one detailed in the article above.
You can read the executive summary, here.
The ME Association recommends that CBT and GET be withdrawn as primary treatments for ME/CFS and maintains that Pacing is the only effective and safe approach to illness management.
The following information leaflets might also be useful:
– Severe ME and Helping You Cope
– Symptom Management
– Coping with Pain
– Ten Key Aspects of Management