PACE Trial: People with ME

Jim Shannon Excerpts

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan (Glasgow North West) (SNP)]

I beg to move,

That this House has considered the PACE trial and its effect on people with ME.

It is a pleasure to serve under your chairmanship, Mr Hollobone.

“The doctor doesn’t see me crawl on the floor. The doctor doesn’t know I don’t shower every day or brush my teeth twice a day like everyone else. He isn’t aware of my frequent sore throats, my poor balance, my difficulties with reading, my muscle twitches, or my sound intolerance, and he certainly wasn’t here to nurse me when once I was too weak to eat.”

Those are the words of a junior doctor living with ME, who alongside nearly 1,000 others has contacted me prior to this debate.

Myalgic encephalomyelitis, or ME, has been described in many ways, but labels such as chronic fatigue syndrome or post-viral fatigue syndrome simply do not come close to the living hell experienced by many ME sufferers—a hell that is made worse by the lack of understanding that is faced when seeking help.

ME is estimated to affect about 250,000 people in the UK and is classified by the World Health Organisation as a disease of the central nervous system. Symptoms can include debilitating muscle pain, severe headaches that are often made worse by light or noise, significant impairment of short-term memory and post-exertion malaise that can last days and even weeks.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing this debate. Does she agree that there is still huge concern among ME patients that the National Institute for Health and Care Excellence says it will not abandon the promotion of physio-social therapies for ME, despite the widespread scientific criticism of the PACE trial methodology, and that we must ensure that that is addressed as a matter of urgency?

[Carol Monaghan]

I thank the hon. Gentleman for his intervention. I will come on to the NICE guidelines later in my speech.

Although ME is a pathological, not psychological, condition, much about it remains a mystery. The reasons for that are twofold. First, many sufferers are housebound and therefore easy for society to ignore. Secondly, there is a lack of awareness among medical professionals and as a result a woeful lack of quality research. What we do know is that ME is often triggered by a viral infection such as flu, but, unlike healthy individuals, people living with ME do not recover. Into that research drought entered the PACE trial—pacing, graded activity and cognitive behaviour therapy; a randomised evaluation.

The trial was unique in medical research. It was funded by the Department for Work and Pensions to the tune of £5 million, a point to which I will return. From the very start the PACE trial was flawed. In contravention of the World Health Organisation classification, it assumed that ME was psychological and sufferers could recover if they chose so to do. Thus the PACE trial was framed in psychological terms.