PACE Trial: People with ME

Debate between Baroness Morgan of Cotes and Caroline Dinenage

Tuesday 20th February 2018 Westminster Hall

[The Minister for Care (Caroline Dinenage)]

It is a great pleasure to serve under your stewardship, Mr Hollobone. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing today’s debate. As she has articulated so beautifully, the situation is clearly very concerning. I know that she has done an enormous amount of work in this area, and has met people, both in her constituency and more widely, affected by the condition, and with expertise on the condition, to hear about its impact on individuals’ lives. As MPs, we all know people in our constituencies who are affected by the condition.

As we have heard, chronic fatigue syndrome, also known as myalgic encephalomyelitis or encephalopathy, is a debilitating and very poorly understood condition, which is estimated to affect more than 200,000 people in England. We do not understand the underlying causes of it, there is no one diagnostic test to identify it, and although patients can improve and recover, there is no cure for it. The condition, which for brevity and to avoid covering you in a thin layer of spittle, Mr Hollobone, I shall refer to in the abbreviated form CFS/ME, can stop a life in its tracks, leaving sufferers unable to carry out the most basic tasks. In the most serious cases, people can be bedbound for weeks at a time. It has a complex range of symptoms, including a very disabling, flu-like fatigue and malaise, and neurological problems. Of course, the impact on friends, families and carers can be significant as well.

It is also true that the difficulties in diagnosis mean that patients with CFS/ME often experience delays in getting the treatment and support that they need. In recognising the need for GPs to be aware of the condition, the Royal College of General Practitioners identified CFS/ME as a key area of technical knowledge that GPs should have as part of their qualifying exams, which answers a question raised by the hon. Lady.

The recommended treatments for CFS/ME, namely cognitive behavioural therapy, or CBT, and graded exercise therapy, or GET, and the evidence for them are the subject of today’s debate. Those treatments were first recommended for patients with mild or moderate CFS/ME in 2007 in the NICE guidance, in line with the best available evidence, which showed that the treatments offered benefits. The guidance sets out that there is no one form of treatment to suit every patient and that the personal needs and preferences of patients should be taken into account. Doctors should explain that no single strategy will be successful for all patients; that in common with all people receiving NHS care, CFS/ME patients have the right to refuse or withdraw from any part of their treatment; and that those with severe symptoms may require access to a wider range of support, managed by a CFS/ME specialist.

The results of the PACE trail, which examined pacing therapy, cognitive behavioural therapy, graded exercise and specialist medical care for chronic fatigue syndrome, were published four years after the NICE guidance. The trial ran from 2005 to 2011 and, contrary to what the hon. Lady said, was primarily funded by the Medical Research Council, not the DWP. Total funding was £5 million and the MRC contributed almost £3 million.

The study was undertaken by the Queen Mary University of London. It was the largest ever trial for CFS/ME, including more than 600 participants in England and Scotland. It sought to assess and compare the effectiveness of the four main treatments for CFS/ME—adaptive pacing therapy, CBT, GET and standardised specialist medical care.

The peer-reviewed trial results published in The Lancet in 2011 found, as the hon. Lady said, that 60% of patients with CFS/ME benefited from CBT and GET when provided alongside specialist medical care. CBT and GET were found to be better than pacing therapy or specialist medical care alone in improving both symptoms and disability, and a follow-up study looking at recovery after one year further supported the benefits of interventions. The trial had ethical approval from the NHS research ethics committee and had ongoing oversight from an independent trial steering committee, which included patient representatives. Trial reports were regularly provided to a data monitoring and ethics committee that had the power to halt the trial if harm was indicated. NICE considered the PACE results in 2011 and concluded that they supported its existing recommendations on both CBT and GET.

The Government are aware that the use of CBT and GET in treating CFS/ME has long been a controversial issue for patient groups, charities and some clinicians. That began with the publication of the NICE guidance 10 years ago and continued with the PACE trial. Since 2011, PACE trial data has been shared with many independent scientists as part of normal research collaboration, including the internationally respected research organisation Cochrane, which independently validated the findings. However, in the last 18 months, the attention on the trial has increased substantially, following a tribunal ruling in August 2016 ordering the release of the trial data to a member of the public, which the hon. Lady referred to. The data has since been examined more widely and critics, including some clinical academics, have suggested that it shows that CBT and GET are not as effective as the trial results suggested.

[Nicky Morgan (Loughborough) (Con)]

This is clearly a very important debate. I think both the hon. Member for Glasgow North West and the Minister would agree that it is not possible to do justice to the concerns raised by all our constituents, and the 200,000 sufferers that the Minister has identified, in half an hour. Does the Minister agree that this is a subject worthy of wider debate in the House of Commons? Constituents such as Sarah Reed, who have written to me, say that because of the belief in CBT and GET, and because academics believe in the results, many other treatments have not been pursued. Does the Minister feel angry about that?

[Caroline Dinenage]

I thank my right hon. Friend for her intervention. As has already been said, it is important that we listen to patients. As I will go on to explain, NICE is now looking at reviewing its guidance on this and, in the light of that, it may well be worth discussing the issue more fully.

Oral Answers to Questions

Debate between Baroness Morgan of Cotes and Caroline Dinenage

Thursday 14th April 2016 Commons Chamber

[Caroline Dinenage]

The answer is not to change the names of the men, as someone has suggested.

[The Minister for Women and Equalities (Nicky Morgan)]

More Carolines!

[Caroline Dinenage]

Yes, more Carolines. The hon. Member for Hove (Peter Kyle) is absolutely right, which is why the Government have done more than ever before to encourage FTSE 100 companies to address that issue. There are now no all-male boards in the FTSE 100. The next stage is to look at the executive pipeline and to make sure that we are encouraging women at every stage, so that we have more women on boards than ever before.

Oral Answers to Questions

Debate between Baroness Morgan of Cotes and Caroline Dinenage

Monday 2nd March 2015 Commons Chamber

[Nicky Morgan]

It might have helped if the hon. Gentleman could have said any of that with a straight face, but he could not because he knows it is all utter drivel. We see fewer unqualified teachers, more children educated in schools rated good by Ofsted and the gap between disadvantaged and advantaged children falling. As we saw with the Labour party’s tuition fee policy announcement last week, Labour’s education policies are a farce, like scenes from “Nuns on the Run”.

[Caroline Dinenage (Gosport) (Con)]

8. What assessment she has made of the potential benefits to pupils of the expansion of the Troops to Teachers programme.

Preparing Young People for Work

Debate between Baroness Morgan of Cotes and Caroline Dinenage

Wednesday 10th December 2014 Commons Chamber

[Nicky Morgan]

First, the hon. Gentleman’s interpretation of the proposals for children’s social care services is absolutely wrong. We have absolutely and categorically ruled out any form of privatisation in relation to those services. I have no idea where he has got that from. All we hear from the Opposition Benches is more negativity about the proposals to inspire our young people about all the options open to them. He mentioned apprenticeships. He ought to reflect on the fact that we have seen more great apprenticeships right across the country. Already this week, we have celebrated the 2 millionth apprentice and she is to be congratulated on signing up to it.

[Caroline Dinenage (Gosport) (Con)]

I warmly welcome the statement. For so long, businesses have been calling for an antidote to the painfully inadequate careers advice, supervised by the previous Labour Government, that spectacularly failed to prepare young people for the world of work. Will the Secretary of State confirm how the proposals will counter the lack of awareness of the value of apprenticeships and solid vocational routes?

[Nicky Morgan]

My hon. Friend is absolutely right. Schools already have a duty to ensure that young people are advised independently on all the options open to them. There is no doubt that one of the things we hear when we go around the country is the positive nature of apprenticeships, but often young people find out about them through a roundabout route. The company will be working with organisations such as the National Apprenticeship Service, but one of the most powerful things is for employers to go into schools and speak about the opportunities available to them. I was at Crossrail yesterday talking to one of the apprentices. We hope very much that he, and other apprentices, will go back into schools to talk about their experiences in the world of work.