ME: Treatment and Research

Kerry McCarthy Excerpts

Thursday 21st June 2018 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

Thank you, Mr Rosindell, for calling me to speak.

I am here to speak today partly because constituents have been in touch to ask me to do so, but also because I have a very good friend who has been affected by myalgic encephalomyelitis, or ME, since about the age of 15 and she is in her early forties now. When I say “affected by” ME, that means that she did not go on to college and she has never held a job. She is not at the worst end of the spectrum of severity, but I think I can probably best describe her condition as just almost constantly feeling rough. So, it is like either having flu or migraines, or aches and pains.

I am aware of my friend’s condition. Obviously, it is one thing to read up on the condition or to hear accounts from constituents who come to see me, and I have had constituents with ME and fibromyalgia, which is a similar condition, come and talk to me. However, when someone has a very close friend with ME, they know that every time they try to make a social engagement with them, it will always be, “Well, Lucy will come if she’s up to it that day.” My friends and I are all planning to watch the football together on Sunday. However, we will not know until Sunday morning whether Lucy is well enough to attend, and half the time that she does come along to events, it is possible to tell that she is struggling with a migraine or flu, but she just desperately wants to see her friends. That really brings home just how debilitating a condition ME is.

As the hon. Member for Cheltenham (Alex Chalk) said, there is a cumulative effect with ME. People make such a big deal of having a cold, or just feeling a bit under the weather, or feeling hungover. Lucy feels like that most of the time and obviously there are other people with ME who are completely bedridden or who cannot bear bright lights. I had a member of staff whose younger brother came to her wedding in a wheelchair, because he had ME. So it affects people in many ways.

However, in some ways the cruellest impact of ME is the fact that sufferers are not believed and that it is a hidden illness, so to speak. The ME campaign group, Millions Missing, recently held an event in Bristol, where friends and relatives of those with ME laid out pairs of shoes to represent some of those who are suffering from the illness, which effectively renders them invisible, and they also read out stories of the battles that their friends and family members had gone through, as well as expressing their determination to see real change happen.

The organisation Action for ME used to be based in the centre of Bristol but is now based just outside. What really hits home is its raison d’être, as set out on its website, which says the organisation exists

“to take action to end the ignorance, injustice and neglect faced by people”

who have ME. Most other campaign groups for medical conditions do not have to start from there; their starting point might be to raise awareness of the symptoms of particular conditions, or to make calls for treatment. To have to start from the point of view of emphasising the injustice and neglect, because so many people deny that ME exists, just shows how much of a battle we have on our hands.

It was an excellent speech by the hon. Member for Glasgow North West. As she said, ME affects around 250,000 people in the UK. I will just cite one of my constituents, who contacted me to stress the lack of support and understanding that had been experienced when dealing with medical professionals; there are many people with ME for whom it takes a long, long time to get a diagnosis, because of that lack of support and understanding.

My constituent got in touch to share the story of her close friend’s 28-year-old son, who has had ME for last couple of years. She said that the impact on his life has been catastrophic. He was a highly skilled and highly valued journalist for a national newspaper, with a busy and vibrant professional and social life. Since contracting ME, he has been unable to work and is now living at home with his parents, who act as his carers. He has severely limited energy, he is in constant pain and he has obtained no relief or satisfaction from the treatments currently available through the NHS, his GP and the specialists to whom he has been referred. His parents have been left to research and self-fund investigations and treatment themselves, which is plainly not good enough.

In Bristol, we have a chronic fatigue syndrome/ME centre, but it has no doctors and focuses primarily on training in activity management. One of my constituents who received treatment there was highly complimentary about the staff, but she echoes the view of many other patients that occupational therapy is an inadequate approach for people with a highly disabling, multi-systemic disease.

The current National Institute for Health and Care Excellence guideline recommends treatment consisting of graded exercise therapy and cognitive behavioural therapy, but it has been criticised by all ME charities, patient organisations and representatives registered with NICE as stakeholders. We have already heard from a few people today about that.

[Michelle Donelan]

On that point, one of my constituents is a 15-year-old who finds the graded exercises very debilitating; actually, they make her condition worse, which has been echoed by ME charities and the ME community. Does the hon. Member agree that we need to look at graded exercise again in the new NICE guidelines?

[Kerry McCarthy]

Yes. So much concern has been expressed about graded exercise therapy and many patients prefer the concept of pacing, which is balancing activity and rest to help them to manage their ME and work towards recovery. However, that approach is not currently recommended by NICE. I very much hope that the Minister picks this issue up, because it is probably the most controversial issue around the treatment of ME at the moment. I welcome NICE’s decision to review its guidelines—the new guidelines are expected in October 2020, I think—and I urge NICE to listen to the voices of patients with ME.

We have heard from other speakers about biomedical research and the decades of underinvestment in that research. We have also heard that the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government. We can also consider the economic cost of not helping people at least to find a way to manage a condition such as ME; ideally, we would find the cause of ME and a cure for it. Clearly, that economic cost is unacceptable.

[Ben Lake (Ceredigion) (PC)]

The hon. Member has made a very important point about the decades of underinvestment. A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s. The impact on his life has been total. He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs. But as he quite painfully put it to me, he has not had the chance to fail. His is a life unlived. So, given those decades of underinvestment, it is so important that we now change things for the future.

[Kerry McCarthy]

Yes. This is the problem we see over and over again with NICE: how do we value quality of life? We can look at the economic opportunities that are also lost if someone has to spend a lifetime on benefits rather than working and paying taxes, but there is so much more that they could perhaps have contributed to society and that opportunity has simply been lost.

In the time that is left to me today, I will mention the benefits system. We have already heard from other Members about it. Time and time again, we see that the assessments for employment and support allowance and for the personal independence payment just cannot cope with people who have fluctuating conditions, or with people who might be able to pass a test but who feel absolutely dreadful afterwards.

My friend scored zero on the test because she was trying to be as honest as possible, and if she was asked whether she could walk up a flight of stairs, she would reply that she could. However, on a bad day it would probably take her an awfully long time and she would collapse in a heap at the top. Actually, one of the reasons she was turned down when she went for the face-to-face assessment was that the examiners said, “Well, you look very presentable and you’ve washed your hair.” I know that she is bedridden for days at a time and cannot wash her hair, but clearly if she drags herself out for an assessment and is well enough to attend it on a particular day, she will try not to look like she has just got out of bed.

[Carol Monaghan]

Does the hon. Member agree that such questions are entirely unsuitable for people with many conditions but particularly for ME sufferers? “Can you walk up a flight of stairs?” “Yes, but it wipes me out for three weeks afterwards.” The examiners are not interested in the “but”. That does not figure in the questions.

[Kerry McCarthy]

Yes, we need a system that is sensitive to the people who are taking the test, rather than being a series of tick-box exercises—yes or no.

Action for ME gave some interesting evidence to the Work and Pensions Committee when it conducted an inquiry into ESA and PIP towards the end of last year. Action for ME cited one case study of a man who, as well as having ME, is registered blind; he can only just perceive some light. He said, “I’m not disabled by blindness. In comparison to living with ME, my blindness is just an inconvenience.” When it came to the assessment, of course, his blindness scored maximum points, but his ME did not register at all. He said, “Actually, with my blindness I can still go out and walk my dog, but it’s the ME that means I’m housebound. With blindness, I can use audiobooks, but my ME means that I just can’t concentrate for any period of time.” But one condition is accepted as a disabling condition, while the other is not. There is a perception that ME is just about being tired all the time but, as one ME campaigner said:

“The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”

I was going to mention the case of Merryn Crofts, but my hon. Friend the Member for Heywood and Middleton (Liz McInnes) is here and she is her MP. That is clearly an incredibly tragic case—the second person in the UK to have ME recorded as the reason for death on her death certificate.

Instead, I will conclude by mentioning the documentary “Unrest”, a screening of which I attended. Jennifer Brea, a 28-year-old ME sufferer, documented her condition with a camera when doctors told her that her illness was all in her head. Using Skype, she connected with others around the globe suffering with ME, and documented their plight. It is a powerful and moving documentary about the realities of life for many people with severe ME, and I would encourage anyone who is looking to gain a better understanding of the illness to watch it.