I was told fatigue was

At just 21 novelist ELLEN WILES was struck down by debilitating chronic fatigue syndrome for six months. Here she explains why the way the disease is viewed and treated needs to change

BEFORE I fell ill life was sweet and full of promise. Fresh out of Oxford University, where I had somehow come top in the year, I was working in consultancy while I figured out what I really wanted to do.

Then just before Christmas I got flu. I spent the festive fortnight spluttering and by the new year my symptoms were gone. Nothing unusual.

But I found it strangely strenuous to get dressed and walk the 10 minutes into the office. And when I sat at my desk, my leaden head slumped on to it. I upped my caffeine and sugar intake until I was drinking 10 extra-strong mochas a day. But it was no good.

Even the effort of maintaining a conversation made my words slur. It felt like all my bones were melting. My boss told me to go to see a doctor.

Multiple blood tests came out clear. I spent my days at my parents’ house, being cooked for, lying on the sofa, not sleepy but lacking the energy even to keep my eyes open to read or watch TV. I depended on the radio.

I was eventually diagnosed with chronic fatigue syndrome (CFS/ME), told that it could last indefinitely, and referred to King’s College psychiatry department. “Psychiatry?” I laughed weakly at the doctor.

But he was serious. I had no problem with a mental health diagnosis in principle but before the flu I’d been happy. I’d never suffered from depression or anxiety and felt sure that my illness was not psychosomatic.

The doctor agreed it seemed odd but said this was his only option under the NICE (National Institute for Health and Care Excellence) guidelines.

It felt the opposite of “nice” to me. The GP said not to worry as, since I seemed fine mentally, the psychiatrists would likely avoid antidepressants and prescribe exercise therapy and CBT (cognitive behavioural therapy). “That can’t harm, surely?”

THERE was a long wait for the appointment. Prone on the sofa I tried hard not to start panicking about my future. I’d always been active, loved travelling and had so many plans and hopes. Now I started to wonder whether I’d ever leave my parents’ house again except for futile medical appointments.

On some days I would wake up feeling more energetic and try going for a walk along the river. It felt wonderful to be outside. But I soon learned if I walked for more than 15 minutes my bones would start “melting” again.

When I got home I would crash and end up lying on the sofa unable to walk at all for days. I decided I would take it gradually and start with a slow five-minute walk one week, increase that to 10 the next and so on.

These increments felt snail-like but did seem to help over time and reduce crashes. I wondered about the doctor’s “can’t harm” quip about exercise therapy prescribed by psychiatrists who assumed that CFS/ME was all in the mind. But not one part of my mind was resistant to exercise. The problem was my body.

Fortunately my strategy, pursued with my parents’ support, worked. Six months after diagnosis, and by the time my psychiatrist’s appointment finally arrived, I was largely recovered so didn’t have to undergo any of those treatments.