ME: Treatment and Research

Kate Green Excerpts

Thursday 21st June 2018 Westminster Hall

[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 ---

[Luke Pollard]

Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.

I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:

“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”

The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.

[Kate Green]

My hon. Friend will be interested to hear of the 17-year-old son of my constituent, who first contracted the illness as a young child. It took seven years to get a diagnosis. That is an incredibly large proportion of a young person’s life in which to suffer appalling ill health with no proper medical intervention.

[Luke Pollard]

Absolutely.

I want finally to mention Maya, who got in touch about her sister, who is affected by ME. She says:

“Chronic illnesses need far more support and recognition than they get.”

Her sister—like Maya herself, who has fibromyalgia—

“faced repeated uphill battles to get the help she needs, and that’s even been with health professionals.

It’s so little talked about that even doctors and nurses have been stumped as to how to help her. This disease cripples and takes lives and we need to be doing more.”

There is something that we can take from the debate today, which was mentioned by the hon. Member for Cheltenham in relation to brain tumour research—the fact that the power of talking about a condition can bring about change. We saw that with Baroness Jowell, and it is happening today with motor neurone disease, as it is global MND Awareness Day. People are talking about their condition. We also see it in the work on fibromyalgia being done by my hon. Friend the Member for Chesterfield (Toby Perkins). It is a matter of talking about things that are not often talked about. The importance of debates such is this is in raising awareness. People with ME are not invisible. They are as human as we are, and need to be seen and heard. That means investing in proper medical research and in medical education for practitioners, and in a relentless fight against stigma for all people with ME.