PACE Trial: People with ME

Helen Whately Excerpts

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan]

This is a worldwide issue. The PACE trial results have affected people all over the world. In my folder, I have examples of people from Australia, the United States and Canada. Although there are no specialist centres in Scotland, the ones in England are recommending graded exercise therapy, which is making people worse. We need to deal with the issue.

[Helen Whately (Faversham and Mid Kent) (Con)]

Will the hon. Lady give way?

[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.

--- Later in debate ---

[Caroline Dinenage]

It is very important that the hon. Lady has raised that point, and I am sure it will be taken into consideration.

[Helen Whately]

ME sufferers in my constituency welcome that the NICE guidelines are being reviewed, but one problem is that when they find that the existing treatments do not work for them, there is a lack of alternatives. Does the Minister recognise that alternative treatments need to be looked into urgently and offered to patients?

[Caroline Dinenage]

I am sure that will be part of the NICE guidance. Where there is significant evidence that alternatives deserve greater investigation, I am sure NICE will look at that. I will talk about that a little more in a second.

On conflicts of interest, it is obviously important that researchers and scientists with particular expertise in one area will have worked and shared their expertise in related fields and industries, but transparency regarding conflicts of interests is vital to the integrity of the research. The NHS Health Research Authority already issues guidance on conflicting interests and I understand it will consider whether any further clarity is needed.

Clearly, the controversy around the trial is problematic for researchers, but it is most of all distressing for patients with CFS/ME, who deserve the most appropriate treatment from the NHS and to have confidence in the treatment that is being provided. That is why we welcome the NICE decision to undertake a full review of the guidance, which will examine the concerns around the PACE trial and any implications for its current recommendations. NICE develops its guidance independently to support NHS organisations and clinicians to deliver services in line with the best available evidence. It welcomes the input of stakeholders and more than 10 CFS/ME charities and organisations are already registered to support the guideline development process. All other parties who are interested can comment on the draft scope and draft guidelines at the appropriate time during the development process. Final guidance is expected in October 2020.