ME: Treatment and Research

Michael Tomlinson Excerpts

Thursday 21st June 2018 Westminster Hall

[Michael Tomlinson (Mid Dorset and North Poole) (Con)]

It is a great pleasure to serve under your chairmanship, Mr Rosindell, and to contribute so early in this debate. I too congratulate the hon. Member for Glasgow North West (Carol Monaghan). The hon. Member for Glasgow North (Patrick Grady) and my hon. Friend the Member for North Cornwall (Scott Mann) were right to say that the number of hon. Members here in this Chamber shows the importance of this subject; I pay full tribute to the hon. Member for Glasgow North West for bringing this debate.

I am particularly pleased to contribute to this debate as a patron of the Dorset ME Support Group, to set out some of the work the group does and to give a brief insight into the lives of two ME sufferers in my constituency. Dorset ME Support Group’s chairman, Peter Bennett, has been hugely helpful in setting out the challenges that ME sufferers face in Dorset. Much of the knowledge the group has comes from the work done in our community in Dorset. There are nearly 400 members, not just in my constituency, but spread across the whole county, and the group provides practical support to its members and their friends and families.

I will highlight three ways that that practical support is given. First, there are local link groups, offering informal venues for members to meet and socialise. Secondly, there is an annual medical lecture. Thirdly, there is telephone support and personal one-to-one support from a self-care co-ordinator. The group’s activity is quite a feat, given that the charity was set up in 1983 and relies on only two part-time employees, as well as a number of volunteers. Needless to say, more volunteers and trustees would be welcome, so if any residents of Dorset are following our proceedings and would like to get involved, I invite them to get in touch. I am sure the Minister and all hon. Members in the Chamber would wish to join me in congratulating Dorset ME Support Group and Peter, as well as the many other support groups that exist across the country.

I will briefly highlight two constituents’ stories about their journey with ME and how it has affected them and the people around them. The first comes from Megan, who is still at school and has detailed to me the impact of ME on her education and quality of life. The following extract sets out the huge challenges she faces daily as a young person with ME, and it speaks to the lack of independence or control over their lives that some sufferers face. She says:

“I suffer with ME and it has a huge impact on my education. My grades have dropped far below where they should be and I am just not very happy at school in general. As a result of my ME I suffer with low mood and some anxiety more recently. I have had ME for about 18 months now.”

Megan encouraged me to attend the debate, saying

“it would educate you so much on the struggles me and many others face in everyday life.”

I thank her very much for that encouragement and for taking the time to travel to London today to witness our proceedings this afternoon.

One specific point I would like the Minister to consider is the raising of awareness of support groups—not just in Dorset but across the whole country. Megan made the very good point that the Dorset ME Support Group was not recommended to her or her family by any medical professional; they had to search it out for themselves. She says of that group:

“I know that we are lucky in this area to have that, but it’s something that I really think should be available to everyone.”

I agree. Will the Minister consider what formal mechanism might be put in place to ensure that sufferers and their families are informed about such national and local groups?

As the hon. Member for Glasgow North West said, ME not only affects the sufferer but has a wide-ranging impact on families, partners and friends. Another constituent of mine, who is a family member of a long-term ME sufferer, says:

“As my daughter suffered from this debilitating condition for many years, I have personal experience of the devastation it can cause. It came close to costing both of us our careers and certainly changed the course of her life.”

Those brief snapshots, along with the other accounts we have heard and those we will doubtless hear in due course, remind us that this condition takes its toll on the quality of life of everyone that it comes into contact with—not just the 250,000 sufferers who live with it day in, day out.

My final point is obvious and has already been made, and it is about the importance of research. While there is currently no cure for ME, there are treatments that can help to ease symptoms, although no one form of treatment may suit every patient. I am pleased that the Medical Research Council and the National Institute for Health Research welcome high-quality applications for research into all aspects of ME, and I am told that £2 million has been invested in ME research as a result. However, as has already been said, that is a very modest amount indeed. More research into effective treatments is necessary, so that ME sufferers in my constituency and across the country can live as normal a life as possible.