In a BBC TV Studio : An introduction
Copyright © Jane Colby 2013
A hostile groan, a tsunami of censure, swept over just one man, doctor and journalist Thomas Stuttaford, when he uttered the word 'depression'. So-called ME is 'depression', and the voice of the audience rose in a spontaneous clamour of ridicule and anger.
Except... that's not what happened. It's what the viewers saw. It's what the national press reported, standing outraged by their man and against this hoard of uncivil patients and activists.
Who would believe, back in the 1990s, that it was all set up? That nothing about it was spontaneous?
The word 'backlash' has never been more apt. Despite the best efforts and intentions of the programme-makers, what followed The Rantzen Report on ME was, for ME sufferers everywhere, a PR disaster.
The 'discussion' had been choreographed. Sitting centre stage, by the doctor, I was quietly told that Esther would open with me, continue with him, and when he said 'depression' the whole audience would react with a groan. And they did. It's not surprising. In a TV studio, people usually do as directed, even if it makes them uneasy.
And on that gruelling day everyone was exhausted. From lunch-time till after ten at night, it was only the cameraderie that sprang up amongst total strangers that had kept us all going. From our sweltering basement where we waited for hours, to the long corridors with no wheelchairs, the broken escalator we had to clamber up, the rehearsal discussion (bizarrely, about the Royal Family) depleting our brain power before we ever got to discuss ME, the trek back to the basement for a further wait before the programme was recorded, the lack of water and suitable refreshments, the entire backstage experience was shattering.
But back then, it wasn't done to criticise the BBC. People were so grateful that ME was being covered at all. And they meant well, didn't they? Surely, the BBC must know what it was doing?
Reclaiming the patient's voice has always been an uphill struggle, from the time when the Royal Free Hospital outbreak was labelled mass hysteria by later researchers who, we are told, hadn't met those who were struck by it, right through to the smears and vilification of patients in 2012/13.
Yet it is only by listening to the authentic patient's voice, the carer's voice, the child's voice, that we can finally get this show back onto the right road. For these people hold the real evidence, in their experiences, and in their bodies.