ME: Treatment and Research

Stephen Kerr Excerpts

Thursday 21st June 2018 Westminster Hall

[Stephen Kerr (Stirling) (Con)]

It is a pleasure to serve under your chairmanship, Mr Rosindell. I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan) for this campaign, which she is doing a superb job of leading. I cannot remember the name of the academic who wrote to her reproaching her for the stance she has taken in the campaign, but I say to her, I think on behalf of us all, that she is doing exactly what an MP should be doing, and shame on anyone who says otherwise.

I specifically compliment the hon. Lady on her presence at the recent Edinburgh event with the hashtag #MillionsMissing—a global day of action. The purpose of that event was to raise awareness, to highlight the need for support for ME sufferers, and to call for investment in healthcare and biomedical research, which is an excellent summary of the purpose of today’s debate. As has been mentioned, every participant in that event was invited to bring a pair of shoes, but what touched me deeply in the event publicity was that those pairs of shoes symbolised the millions of patients who are missing from their lives because of this devastating disease. The phrase “missing from their lives” deeply touched me.

I rise to speak just for a few minutes to highlight the experience of those who are affected by ME. As my hon. Friend the Member for Cheltenham (Alex Chalk) said, their evidence is compelling and should be a primary consideration. It has been upsetting for me to hear how many people, including those in the medical profession, are unaware, or lack a detailed understanding, of ME. Many persist in believing that the disease is some form of mental illness or neurological disorder. A constituent in Stirling told me that as recently as 2011 they were told, “There is no such thing as ME,” after collapsing at work. She has since been diagnosed with severe ME.

There are many distressing stories about the treatment of people suffering from ME. Another of my constituents was told repeatedly by different doctors that her ME was a psychological problem, and was referred on multiple occasions for psychological assessments. It took her two and a half years to get a proper ME diagnosis.

[Carol Monaghan]

Does the hon. Gentleman share my concern about the aspect of “medically unexplained symptoms” diverting ME down the psychological path?

[Stephen Kerr]

I absolutely agree, and I thank the hon. Lady for her intervention.

I cannot speak too highly of Helen Hyland, a constituent of mine, who has done so much to raise awareness of the condition across the UK in her role within the ME Association. She has also done so much to educate me as her Member of Parliament about this disease. Soon after my election as the Member of Parliament for Stirling, Helen reached out to inform me of what I could do to help the campaign. I am grateful that my office and I have been able to work with her to highlight ME to GPs in Stirling. I am not sure how they have responded to a letter from their Member of Parliament advising them to be careful about how they diagnose those who have the symptoms of ME; I am sure that is a different story.

Helen has been involved with the ME Association since her husband took his own life, a year after being diagnosed with ME. The way she told her children, who were very small at the time, of her husband’s passing outlines how hard ME is to cope with. She said:

“Imagine a Dr Who monster getting inside and taking over Daddy’s head and body. The harder Daddy fights, the harder the monster fights back. The monster always wins”.

For people with ME and those around them, the diagnosis is crucially important. To be told that they have a medically recognised condition is validation for them, yet there is still so little known about this illness. There is no easy way of diagnosing it, no clear treatment, and no known cure. That has to change. Along with many others, I will continue to support the ME Association and any campaign that pledges itself to combating ME.

I will now turn to the first-hand account of a lady called Jules Smith, who wrote to me and asked me to make her voice heard in this afternoon’s debate. I will do that because her story, as touching as it is, is not her story alone, but the story of many others. She wrote to me:

“For over ten years I was a therapist and devoted my life to helping others as best I could.

I first became ill about 8 years ago but kept going and put it down to general aches and pains. I finally had to give up what I loved in November 2016 with a final diagnosis of severe ME in May 2017.

I’ve been to psychology to be told it’s all in my head, pain management to be told to push through the pain and physiotherapy who told me my muscles were so weak there was nothing they could do!

I’ve been on so many prescribed medications and vitamins; last year I was taking in excess of 22 tablets a day and yet I would still crash.

I am 90% house and bed bound and my GP has exhausted all avenues for me therefore—as I was told—‘you must try and manage your illness as best you can.’

I had been told that graded exercise therapy would help me starting off by stretching then low impact sports like walking. I’m an ex-runner who was capable of running a 10k every week so I was familiar with pushing through the pain barrier and grading my exercise but it has made me more severe. I feel like my life is just wasting away; I get all my prescription medications on repeat, I get a telephone appointment with my GP every once in a while, and that’s it!

My husband works long shifts with the Scottish Prison Service and I’m home alone for at least 10 hours a day; sometimes I have to crawl on my hands and knees to get to the bathroom and I can go days on end without being able to bathe or shower as I’m just too exhausted to move!

I feel like so many others that we are just left to rot; I feel like my mental health is now suffering as I become more and more isolated from society and there’s no one to help me and many others just like me.

I am severely fatigued to the point that I cannot stand upright otherwise I get so dizzy I’m about to faint. I also have severe laboured breathing but there’s nothing recommended but rest and resting doesn’t cure ME.

I don’t wallow in self-pity. I spend what time I can online being an advocate for Action for ME and Millions Missing Scotland and whenever I can, I offer support to other members of the social media groups I am in and share my stories and experiences.

I have a devoted and caring husband who does everything he physically can to look after me but it’s tough when I’m home alone for so long with no care.

I try to do what I can to keep my spirits up but on days when I crash for no reason and I can’t watch TV, or read a book, I have to have my curtains drawn and be in a darkroom. Sometimes I even need soft silicone earplugs to block out any noise as I get cognitive dysfunction too!

This is not living Stephen this is just existing!”

I thank Jules for allowing me to share her story in the debate. I am grateful and feel privileged that I was allowed to let her voice be heard today in Parliament.