Chronic Fatigue Syndrome is a PHYSICAL condition not a mental illness, says Ellen Wiles

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. 

The majority of CFS/ME sufferers are beset by it for life – often trapped inside their homes – and face a significantly increased risk of suicide. 

A few years later I’d retrained in human rights law and found myself working on a case challenging the NICE guidelines on CFS/ME, in which the claimants were sufferers who shared my frustrations. 

While researching it I learned more about the science, including immunology research that had led the World Health Organization to categorise CFS/ME as a physical/ organic condition, not a psychiatric one. 

This made much more sense.  

My immune system had been weak for years and at 11 I’d almost died of osteomyelitis (a bone disease), saved only by being pumped with massive doses of antibiotics for months. 

A decade later I’m relieved to see it looks as if things are finally changing. 

New evidence, led by Stanford scientists, proves beyond doubt that CFS/ME is a chronic inflammatory disease, often post-viral, diagnosable by blood tests and treatable with immunosuppressants. 

It also proves that the psychiatric treatments still prescribed in the UK under the NICE guidelines are not just misplaced but often damaging, causing the disease to worsen. 

The implications are serious: there are approximately 250,000 CFS/ME sufferers in the UK, 75-85 per cent unable to work and 25 per cent housebound or bedbound. 

I’m as active as ever, have travelled a lot more, am happily married with two zany, wonderful children, and have written a novel which is getting lovely reviews. 

These dreams could so easily not have come true. 

NICE has finally agreed to consult on a guideline revision but say that process will take four years. 

Four years too long for sufferers wilting at home and being forced into damaging psychiatric therapies. 

Ellen’s The Invisible Crowd is out now published by HQ, priced at £12.99.