All in my mind

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 DRAINED: Ellen was housebound until gradual increases in exercise led to a full recovery. She is now leading the fight for a change in treatments 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