ME: Treatment and Research

Jim Shannon Excerpts

Thursday 21st June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on advancing a comprehensive and compassionate case on behalf of ME sufferers and I congratulate her on encapsulating the issues so well. Her constituents will be very proud of her; she can be assured of that.

As someone who has had the opportunity to speak on behalf of ME sufferers over the years, before I came here in 2010, one frustration of my former life as a councillor and as a Member of the Northern Ireland Assembly was that if I put “ME” on a disability living allowance form, as it was then, that I was filling in for a constituent, and went to the GP and said, “I need a wee letter to support this person who has ME”, they would say, “They have what?”, and I would have to explain. That is in the past now, thank goodness, and I can honestly say that in the past few years there has been a better understanding from GPs and doctors in my constituency. They have come round from not understanding ME to understanding it, so when someone needs a form to be filled in, it is filled in right; if they need a support letter, that happens too. That is very important.

It was my pleasure to support the hon. Member for Glasgow North West at the Backbench Business Committee, so I wanted to make a contribution today.

[Carol Monaghan]

I should have paid tribute to all hon. Members who supported my application for the debate, and who came along to make representations to the Backbench Business Committee, like the hon. Gentleman. I see several of them present, and I thank them.

[Jim Shannon]

We are always very pleased to support the hon. Lady’s proposals to the Backbench Business Committee.

This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.

We are fortunate to have a Minister who has a deep interest in this subject matter. He is in deep conversation with his Parliamentary Private Secretary, the hon. Member for South Suffolk (James Cartlidge), at the moment, but I am sure he will turn round shortly and be aware of my contribution. I am sure that he will respond constructively.

I want to thank MEAction, Action for ME, the ME Association, the ME Trust, Blue Ribbon for the Awareness of ME, the Centre for Welfare Reform, Forward-ME, ME Research UK, the Welsh Association of ME and CFS Support and Hope 4 ME Fibro NI in particular. All those organisations—there are lots of them—have furnished us with lots of information, and I thank them. I particularly thank one constituent, Sally Burch, who ensured that I had all the details and information to help me. She comes to see me regularly and fills me in on all the details.

ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.

[Kate Green (Stretford and Urmston) (Lab)]

The hon. Gentleman is right to raise the issue of children with ME. It has an impact on their education because of the lack of access to consistently available home education where that is necessary. Does he agree that the Minister may want to take that up with his colleagues in the Department for Education?

--- Later in debate ---

[Jim Shannon]

I thank the hon. Lady for her intervention, which gives me a chance to say that I have constituents who have had to be home-schooled for the simple reason that they have ME. I am aware that the illness affects not just adults, but children, and I have seen the effect on their education as well.

Very few of the hospital-based ME services provide a domiciliary service for people who are unable to attend an out-patient department. There is now only one hospital service that has dedicated in-patient beds for the assessment and management of people who require hospital admission to a ward where staff have experience in dealing with the condition.

Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. We have a non-functioning Assembly, as many hon. Members will know, which means that trying to initiate something is even more difficult now than in the past. The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.

The briefing I received provided so much information that it would be impossible to go into all the details in the short time that I have available, and I will not try to do that, but I will highlight the problem of the 2007 PACE trial that my constituents raised with me. In 2007, NICE recommended graded exercise therapy and cognitive behavioural therapy for patients with ME. That guideline was based on weak evidence from small trials, so the much larger PACE trial was designed as a definitive test of such therapies. It cost some £5 million and was funded mostly by the Medical Research Council, with, uniquely, some funding from the Department for Work and Pensions. PACE researchers reported that with cognitive behavioural therapy and graded exercise therapy approximately 60% of patients improved and 22% recovered. The treatments were claimed to be moderately effective and safe.

However, PACE’s claims ran counter to patients’ knowledge and lived experience. My constituents told me that that was not how it really was. That led some to examine the trial’s methods, and they found two considerable problems. First, the objective results were poor. After a year of therapy, the graded exercise therapy group’s increase in walking speed was less than half that achieved in three weeks by a sample of class II chronic heart failure patients receiving graded exercise. The trials were suspect before we even got the information.

Secondly, after the trial had finished, the PACE authors lowered the threshold they used as the definition of improvement—it was as if they had taken the figures and manipulated them to get what they wanted. That inflated the number of participants who were classed as recovered or improved. In some cases, even patients whose condition had deteriorated during the trial were classed as recovered. I believe in miracles—I know they happen—but that was not one of them, because people had not recovered.

After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results.

All that was highlighted to me during a constituency meeting with Sally Burch and other ME sufferers, including a wonderfully intelligent constituent of mine who had noted the questions that I had asked at Westminster and the letters that I had written to the Minister about the trial. She explained her day-to-day life. I knew her day-to-day life as a healthy person, so now that she was not, I could clearly see the difference. She said that her treatment and care are not acceptable.

Hope 4 ME Fibro NI, of which many of my constituents are members, underlined its opinion on the need for ME inclusion in the medical curriculum after the charity hosted an ME educational event on 24 May at Queen’s University Belfast, which nearly 400 medical students attended, as did many lecturers. They all have the same interest in ME: how we go forward, what the PACE trial did and whether it helps us. If it does not help us, let us highlight that. The results of the charity’s questionnaire are revealing and clearly demonstrate the desperate need for ME to be included in the medical curriculum. Other hon. Members have spoken and will speak about the need for research. We are looking for many answers, as always, but if there was one particular issue that we were looking for help with, it would be the research. Perhaps the Minister will give us the encouragement that we need in his response.

ME is a serious illness, which seriously affects so many in our communities. These people are not lazy and they must not be made to feel like that. To say to an ME sufferer, “Get up and have a walk. You will be fine,” is tantamount to saying to someone with a bullet in his leg, “Stick a plaster on it, ignore the blood flowing down and soldier on.” We must send the message that that does not work and is not helpful. We in this place must ensure that diagnosis and care are appropriate, which is not the current situation, so I fully support the calls of the hon. Member for Glasgow North West.

On behalf of my constituents, and all constituents across the United Kingdom of Great Britain and Northern Ireland, I am asking not simply for words of understanding from the Minister, but for action to be taken to change the “Get up and get on with it” mentality to an “I will help you to get up and get on with it, and find a way to facilitate an easier way of living your life” mentality.

In this debate, we want to highlight ME and show what the problems are. We look to the Minister for action; we need his help to make it happen. We need something practical that can and will help, and that will give encouragement to our constituents and to all ME sufferers across this great nation of the United Kingdom of Great Britain and Northern Ireland.