PACE Trial: People with ME

Layla Moran Excerpts

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan]

I will make some progress. The PACE trial was used to inform NICE guidelines, which has meant that symptoms have been disregarded, and sufferers are considered to be attention-seeking hypochondriacs or even, in the case of some female patients, hysterical. Although in some ways the lack of belief has been the most difficult thing for sufferers and their families, the impact of the PACE trial and the resulting NICE guidelines is far further reaching. Many sufferers have reported major difficulties in accessing financial support. Employment and support allowance assessments do not consider the impact of exertion on a person’s ability to function on subsequent days, and personal independence payment assessments, which consider ME to be psychological following the PACE report, mean that sufferers struggle to access that entitlement and simply rely on family members.

Conflicts of interest in the trial are also deeply worrying. The former chief medical adviser to the DWP sat on the trial’s steering committee, and ultimately the results of the trial have been used to penalise those with ME. When we consider the relationship between key PACE investigators and major health insurance companies such as Unum, the trial takes on a far more sinister slant. Sufferers have reported that their health insurance company would pay out only if they undertook a programme of GET—an impossible task, as the insurance giants knew.

It is not only adults who are affected. Children with the disease have been subject to care proceedings because of widespread misunderstanding among health workers. ME has been mistaken for school phobia, neglect or even abuse.

[Layla Moran (Oxford West and Abingdon) (LD)]

Will the hon. Lady give way?

[Carol Monaghan]

I will in a moment. One mother contacted me, saying:

“Our 12 year old son was seen at specialist ME centre by a consultant who prescribed GET. In one year this ‘programme’ caused our youngster’s body to develop higher and higher levels of inflammation, he began limping, was in continual pain from not only the ME headaches but joint and foot pain. The comments were ‘well he managed to limp into my office’, ‘you were very active, now since the virus you are very inactive, so you will have this pain due to lack of exercise’.

GET caused his body’s immune system to go into overdrive. My son developed Juvenile Idiopathic Arthritis. This was treated by a paediatric Rheumatology Consultant who was shocked it had been left so long and told my son that his toes would be permanently swollen even after treatment as the bones had grown abnormally during the inflammation”.

[Layla Moran]

I, too, have been contacted by parents in my constituency. In the case of one constituent, her daughter took a year to be diagnosed and missed an entire year of school as a result. The effect on children’s lives at a very young age is palpable.