ME: Treatment and Research

Gavin Newlands Excerpts

Thursday 21st June 2018 Westminster Hall

[Gavin Newlands (Paisley and Renfrewshire North) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Gapes. I pay tribute to my hon. Friend the Member for Glasgow North West (Carol Monaghan) for securing this debate, for setting out the issues so powerfully, and for sharing the sad case of Merryn Crofts, which the hon. Member for Heywood and Middleton (Liz McInnes), her MP, elaborated on.

I want to say to Professor Sharpe that it is not my hon. Friend’s conduct that is unbecoming; it is his. Sending such emails does nothing for the reputation of the scientific research community, and he should apologise.

People with ME and related conditions do not believe their voices and concerns are properly listened to. With that in mind, I pay tribute to the hon. Member for Stirling (Stephen Kerr), who shared with great compassion Jules Smith’s story, which deeply affected Members from across the House. We sometimes talk about health issues in this House abstractly without fully conveying the impact they have on people’s lives. Well, not today.

Action for ME and the ME Association are both well represented in the Public Gallery today. Along with many other organisations, they do vital work to champion and support the 250,000 people across the UK who suffer from this condition. On its website, Action for ME tries to increase people’s understanding of ME by asking people to imagine a number of situations:

“Imagine having months off from work because you are so ill, so pole-axed by fatigue and pain, that you are no longer able to tell the time when you look at the face of a clock. Imagine you can no longer read even the shortest paragraph because your power of concentration is reduced to zero.”

One of my constituents, whom I have subsequently met twice, wrote to me about the experience of living with ME. She said:

“One of the things that society needs to get to grips with is the fluctuating nature of ME where an individual may appear to be fine one day, yet the next day they are bed ridden or much worse, or they may appear fine but really aren’t. Unless people have x ray vision, they cannot see the brain, spine, muscles, heart, cells and so on of another individual. The condition fluctuates not only from day to day and week to week, but it can vary from hour to hour. And of course there is the aspect of…post exertional exacerbation of symptoms. That is, after exertion their ME symptoms often flare up”—

although that can be delayed.

“For one person that exertion may be as little as getting up to brush their teeth, for another it may be that they worked 4 hours that day instead of the 3 that would have been manageable. This could leave them ill the next day or being off work for a week. There can also be a sudden and severe decline in symptoms. For example, an individual may have gone out that day feeling ok, but whilst out they suddenly reach saturation point and their levels of physical fatigue and pain may be intolerable.”

That is the experience of 250,000 people in the UK. It is important that we do much more as a society to find a cure for this disease. Sadly, the majority with ME do not have access to adequate care and resources. Shamefully, they also face ignorance and injustice from people who should know better, including medical professionals and the Government. Many primary care professionals receive minimal training on ME, and it continues to be dismissed as “medically unexplained”.

Treatment for ME currently focuses on addressing the condition’s symptoms, but, as we have heard, concerns have been raised many times about the recommended treatments, such as cognitive behavioural therapy and graded exercise therapy. Like other Members, I am glad that NICE is reviewing its guidelines, and I hope ME sufferers are at the heart of the review’s outcomes.

The Government’s welfare reforms are causing a lot of heartache and stress for millions of people, including people with ME, many of whom struggle to access welfare benefits. The written evidence that Action for ME submitted to the UK Parliament’s Work and Pensions Committee’s inquiry into personal independence payments and employment and support allowance assessments, which the hon. Member for Cheltenham (Alex Chalk) touched on, raised serious concerns about how the welfare state treats people with ME. Its research found that assessors do not have a sufficient, or even basic, understanding of the condition, and so cannot carry out accurate assessments of people affected by it. That causes assessors to misinterpret the condition, wrongly diagnose it and file inaccurate reports, which have dire consequences for people’s benefit entitlements.

That basic lack of understanding of ME is forcing individuals down the mandatory reconsideration and appeal route to get access to the benefits they are rightly entitled to. Some 76% of people with ME who are forced to do that believe that the initial assessment failed to represent their condition or needs properly; 52% believe that the assessment was not conducted fairly or appropriately; and 32% say that the amount they were awarded did not cover or meet their needs.

That experience is familiar to one of my constituents, whom I assisted recently. She has ME and other medical conditions, and she told me that

“ESA and PIP assessments are designed in a way that discriminates against people with ME and other fluctuating and unseen conditions. This causes untold distress and harm to people with ME, who already feel very vulnerable and unheard.”

She also believes that the assessments have led to her condition deteriorating, and that

“without a shadow of a doubt”

she would have been able to go back to work a long time ago if it was not

“for the recurring relapses caused by a system that is supposed to support you while ill and while trying to recover, and instead it causes harm. It is exhausting, demeaning and damaging to recovery.”

She feels that

“people with ME often feel ridiculed, abandoned and even bullied and abused. It is a highly vulnerable place to be when your basic needs (and in some cases your continued existence) and the way you are treated and viewed by society is dependent upon the understanding of those with power”.

I am sure she is not the only one who feels that way.

I accept that ME can be an invisible condition, but surely the Government can take that into account so people receive fair assessments. As my constituent said,

“the more people who begin to learn the truth about this devastating condition, the sooner people with ME can begin to be treated with the respect and dignity that people with serious medical conditions are entitled to.”

As a society, we need to challenge ourselves better to understand this condition, and that should start with the Government. The Scottish Government have funded a project to educate health and social care professionals, and improve the health and social care support available to people with ME. The Inform ME project will develop a peer mentoring, self-management support network to build confidence and reduce isolation among people affected by ME.

We have heard today that it is accepted that not enough research has been done to increase the knowledge of the different forms of ME. However, the UK CFS/ME Research Collaborative was created in 2013, and it is hoped that greater attention will be brought to this area. It is true that ME has received far less research funding than other conditions with a similar prevalence and disease burden. The funding has tended to be for psychological and behavioural studies, rather than biomedical research. As my hon. Friend the Member for Glasgow North West outlined, the Scottish Government are taking steps in this area and have recently announced a PhD scholarship focused on improving the understanding of ME.

People of all political persuasions and none want to see a world without ME. The Minister has listened to many strong views this afternoon. I know he is eagerly awaiting the outcome of the NICE review, but I hope he will take on board and reflect on the points that have been made today—in particular, those relating to GET and the DWP’s procedures for ME. I hope we can help people living with this condition sooner rather than later.