ME: Treatment and Research

Stephen Pound Excerpts

Thursday 21st June 2018 Westminster Hall

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Gapes. I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this very important debate.

Merryn Crofts, who has already been referred to in this debate, is one of just two people in the UK who have had myalgic encephalomyelitis recorded as the cause of death. She was my constituent and lived in Norden in the Rochdale area of the Heywood and Middleton constituency. I spoke with her mum, Clare, this week, who told me that the reports about Merryn in the newspapers did not really cover the whole of Merryn’s condition. Clare wanted to be here today to hear the debate, but could not travel to London because of a new baby in the family, so I hope that she is able to watch the debate back home in Rochdale. I send my best wishes to her and to the new baby.

[Stephen Pound (Ealing North) (Lab)]

As do all of us.

[Liz McInnes]

Indeed, from all of us. Merryn met all the diagnostic criteria set by NICE, and the Canadian consensus criteria, for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. Merryn was totally bedbound. She physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position or even if her bed was raised slightly. She was hypersensitive to noise, light, touch and movement. She suffered so badly from pain—head, muscle, neurological and stomach pain—that she could not get out of bed. Her GP had worked in a hospice for 10 years, looking after cancer patients, and said that in that job she could not always take away pain, but she could manage it. In Merryn’s case, the GP said that her pain was unmanageable. Although Merryn was on diamorphine and ketamine, she was still in pain. Any kind of stimulus, even just a nurse walking in to the room, was an exertion to Merryn. She was permanently on syringe drivers and receiving injections. She was permanently nauseous.

The terms ME and chronic fatigue syndrome are often used interchangeably, but Merryn’s mum tells me that fatigue was the least of Merryn’s symptoms. In her view, the use of the term chronic fatigue syndrome should be abandoned, as myalgic encephalomyelitis is about so much more than just fatigue.

Merryn was only 15 years old when her illness started. For the first year, she was not housebound and she used to go out in a wheelchair, but as her condition worsened she became unable to go out. She went from a young girl who loved life, with passions for drama and acting, to a housebound patient, whose family had to do more and more for her, even things like chatting on her behalf on social media—simple things that she was no longer able to do on her own.

I mention social media because Merryn was helped a great deal by the online ME community. Her mum tells me that Merryn always wanted positive support and was very choosey about who she communicated with. She did not want to speak with people who exuded negativity, but she was part of a big online ME community, which included people such as ballet dancers and sportspeople. That raises the issue of whether research should look at the lifestyles of those who contract ME and whether there is a susceptibility that can be exacerbated by leading an active life and pursuing strenuous sports or vocations.

Merryn’s mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it. She tells me that Merryn thought she could push through the condition and keep going, although her family really wanted her to slow down. Sadly, it was only when the family contacted a private medical practitioner that Merryn was given the advice to slow down and told that she needed to rest. The specific advice given was,

“Whatever you feel you can do, only do 50% of it.”

Merryn’s mum feels very strongly that had Merryn been given that advice when her condition started, she might not have gone on to develop severe ME, and she strongly urges that the NICE guidelines should be reviewed. Merryn’s mum said,

“If the PACE trial were a drug, it would have been banned by now.”

I hope and I am sure that the Minister will refer to that in his response.

Merryn’s family are still very involved in the ME community and they run the “MErryn’s Legacy” Facebook page, which raises money for research and includes fundraising activities such as skydiving and climbing Ben Nevis: impressive feats that are done on behalf of the ME community as representative of the things they would like to do but are unable to because of their condition. The fundraisers do those activities on their behalf.

We need to invest more in research into ME. The best research, as has already been mentioned, is being done in the States. Here it is very much funded by charities and tends to concentrate on psychological issues rather than physical changes such as inflammation of the brain and changes to the central nervous system, and we need to do much more research into the physical aspect.

Nancy Klimas is a major ME researcher based in Miami. She has more than 30 years’ professional experience and has achieved international recognition for her work on ME. She compares patients with severe ME, like Merryn, with those in the terminal stages of HIV/AIDS infection in terms of the levels of pain that they suffer. Many comparisons can be drawn between HIV/AIDS and ME. When HIV was first identified it was thought to be incurable and a certain death sentence, but incredible research has produced advanced treatment with retrovirals, which, although they do not provide a cure, can be used to manage the disease, and it is no longer the death sentence that it was.

In comparison, ME is not seen as a death sentence, but, as Merryn’s case sadly shows, it can be fatal. It is also described as a kind of living death. The work done on HIV/AIDS shows how powerful good research can be. I hope that in future, following investment in ME research, we may also see great advances made in the treatment and knowledge of ME.

We also need to invest more in training for our doctors, especially general practitioners who are the clinicians likely to be the first port of call for those suffering with ME. Our GPs need the skills to recognise the signs and symptoms and to signpost patients to the appropriate specialists. I hope that the Minister might be able to refer to those points in his response. I am immensely grateful to Merryn’s family for sharing so much with me and for allowing me to tell her story.

--- Later in debate ---

[Stephen Pound (Ealing North) (Lab)]

It is a pleasure to serve beneath your benevolent oversight, Mr Gapes. I am pleased that my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) is on the Opposition Front Bench, and am also pleased to see the Minister. Those two people combine deep humanity with real understanding of how illness is examined, and how stereotypes and stigma can be challenged. Above all, I pay tribute, as everyone who has taken part in the debate would wish to do, to the hon. Member for Glasgow North West (Carol Monaghan). I was one of those privileged to support her in applying to the Backbench Business Committee. It is interesting that sitting with her at the table were members of the Scottish National party, Plaid Cymru, Labour and the Conservative party. There were no Liberals there at the time, but the right hon. Member for Kingston and Surbiton (Sir Edward Davey) was present earlier.

We supported the application for a debate so strongly not only because there is a crying need for some proper authoritative research at last but because of the personality of the hon. Member for Glasgow North West and the way she argued her case. She is not just a great humanitarian, but a scientist. She was a physics teacher, and is a pilot. She understands the importance of empirical evidence and data, and wants to see scientific evidence. On the occasion of our application, someone said that encephalomyelitis is probably the illness with the worst public relations officer ever, because there is no other illness so badly presented, or about which so much nonsense is spoken, or that has so many stigmas and stereotypes. One reason I supported the hon. Lady was that she seeks to cut through all the nonsense, get back to proper, hard scientific evidence, and move away from some of the dismissive, cruel and frankly painful comments that are made.

There are a number of arguments in favour of proper analysis and, subsequent to that, treatment, research and proper therapeutic assistance for what is a ghastly, debilitating illness. There is the economic case. In September 2017 the Optimum Health Clinic Foundation produced a detailed breakdown, in which it was calculated that the illness costs the UK economy more than £3 billion a year. That is an argument that can be made, but I would go beyond Gradgrind, and that sort of desiccated, calculating machine politics, to the humanity.

I want to talk about one particular group—children and young people. I am sure that it has already been mentioned that 21 years ago Dowsett and Colby produced detailed research showing that the biggest cause of long-term school absence was, as Members may guess, encephalomyelitis. Let us imagine the situation. A child at primary school has the symptoms of encephalomyelitis but does not know the name, probably could not pronounce it, and does not know what it is. However, they cannot get themselves to school. I am not talking about the schoolboy, with his

“shining morning face, creeping like snail

Unwillingly to school.”

I mean a child who simply cannot get out of bed or off the sofa or couch, and to school. What happens to such a child? I will tell the House—often they are referred to social services. Child protection referrals are often made because a child misses school. Imagine the impact on that child, family and school. I have known you long enough, Mr Gapes, to know that you have the milk of human kindness flowing through your veins. Can you imagine what it must be like for a primary school-aged child who is suffering from something terrible that they cannot even put into words to be penalised for it—interrogated and asked to prove that they are ill when they can hardly bring themselves even to speak or raise the energy to make their case? How cruel.

In some cases, the parents simply will not know. One reason I am so particularly keen to get some proper empirical data and research is that a family can have four, five or six children, and one suffers but the others do not. Imagine how the one child must feel, and how the other children will react to the one child. Can we imagine anything more brutally cruel than a situation in which a child is trying to pursue their education but is physically incapable of doing so? The great lesson that we learned from Sure Start—and, earlier, from the Jesuits—is that getting things wrong in the first seven years usually means they are wrong for life. If a child is suffering in the way I described, in the first few years in primary school, I despair for their future.

We must cut through all the mist, fog and obfuscation—the stigma, and all the words and insulting expressions—and do some research. Is the condition psychological, physical or psychosomatic? What is it? We know it cannot go unaddressed any longer. We cannot allow another generation to grow up incapable even of giving a name to what they suffer from. If diagnosis is not possible, what is the prognosis and the therapeutic response? What is the health service doing? What of primary care and the GP service? If they do not have the data, they cannot produce a cure. I do not make the economic argument, although obviously it is important. We need productivity and economic activity. However, it is above all the sheer humanity of the case made by the hon. Member for Glasgow North West in her brilliant speech that will have swept along everyone who heard it today. We simply cannot allow this situation to continue any longer. It is too painful, cruel, counterproductive and dangerous, and we are losing young people.

I know that there is mature-onset ME—it is not just children who are affected—but the people it affects have good advocates, and great speeches have been made on their behalf this afternoon. I want to make the case for children, because they can very seldom make that case for themselves. I look to the Minister and my hon. Friend the Member for Washington and Sunderland West. Today is the day when we finally start to take encephalomyelitis seriously and stop condemning people suffering from this ghastly, debilitating disease. Today is the day when we say, “Yes, we understand the pain people suffer. Yes, we are going to do something about it. Yes, we respect you. Yes, we value you. Yes, today we are going to start investing in diagnosis, analysis and, God willing, a cure.”

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

I shall start where everyone else has started and thank the hon. Member for Glasgow North West (Carol Monaghan), who secured this important debate, very much. She did so along with my right hon. Friend the Member for Loughborough (Nicky Morgan), who has to be in her constituency today to deal with a royal visit—lucky her.

Raising awareness of this debilitating condition is critical, and the hon. Member for Glasgow North West has undertaken significant work in this area over a number of years. Thirteen—lucky for us—Back Benchers spoke in today’s debate. I counted 25 Members present at our peak, which is excellent. I spend a lot of time with the hon. Member for Strangford (Jim Shannon) in Westminster Hall, it must be said, but that is a lot of MPs for a Tuesday afternoon, let alone a Thursday afternoon, so that is excellent.

As we have heard, ME, otherwise known as chronic fatigue syndrome, is an incapacitating condition with a plethora of symptoms, primarily characterised by long-term fatigue, chronic pain and post-exertional symptoms of malaise, to name but a few. There are many more and we have heard some excellent testimony of those from Members on behalf of their constituents.

As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people. I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her but she knows who she is and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.

I am surprised that other than the hon. Member for Bristol East (Kerry McCarthy), nobody mentioned “Unrest”. I know it well. Some constituents came to see me to tell me about the film. It had screenings in Winchester and Chandler’s Ford in my constituency, which were oversubscribed—packed to the gunwales—and there was not a dry eye in the house. I pay great tribute to Jennifer and her partner Omar who made that film. I am sure there were times when it gave Jennifer’s life a great purpose, but I am sure there were times when she wanted to say, “Get that bleeping camera out of my life!” There is a touching moment at the very start of the film when she says that when she was a young girl, she want to eat the world “whole”, because she wanted to see it all and do it all. That went to the heart of her great disappointment that she was so sick.

Jennifer set out very clearly and movingly the sheer ups and downs of this condition. For some, it is almost a constant down. I was struck by watching her at the Princeton University reunion day, during the rather surreal procession through the streets by old boys and girls from Princeton. She so enjoyed seeing old friends that day and looked full of life, but within an hour of it finishing she was absolutely poleaxed on the floor, saying that she felt her eyes were being pushed out of her head from the inside. It was horrible to watch.

It was interesting how the film moved around the different wild and crazy treatments that are out there on the internet. If hon. Members google any condition, they will see lots of wild and crazy treatments, but that is particularly the case with ME. One of the saddest things in it, although it covered it well, was the point that my hon. Friend the Member for Cheltenham (Alex Chalk) raised of the suicides resulting from this condition.

Millions Missing was mentioned by many Members, and I see some people wearing T-shirts in the Public Gallery. The hon. Member for Ealing North (Stephen Pound) is right that it has had some bad PR, but it is getting its act together. Millions Missing is an absolutely brilliant way of encapsulating the problem. A number of Members mentioned the shoes; I was particularly moved by the messages on the shoes. They were outside Richmond House, where the Department of Health used to be, as part of the Millions Missing campaign. The mission was to write what you miss; somebody had written on a pair of ballet shoes, “I miss dancing in these shoes.” That was really moving and a human way of putting it. I might touch on the film again a little later.

[Stephen Pound]

I assure the hon. Gentleman that I was not implying any absence of PR skills on the part of the advocates and the people who suffer from this debilitating disease; I was anthropomorphising the actual disease itself. I stole the words of the hon. Member for Cheltenham (Alex Chalk) when we pitched this debate to the Backbench Business Committee, because he was not in Westminster Hall at the time.

[Steve Brine]

That is so unlike the hon. Gentleman. Good clarification.

The stigma quite rightly has been mentioned by pretty much everyone who have spoken today. We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times. I have seen a clip of Ricky Gervais in one of his otherwise amusing stage shows, when he says of ME, “Yes, that’s the one where they say I don’t want to go to work today.” Ricky Gervais is a very talented comic, but given that he is quite active on Twitter, perhaps he could retract that and apologise to the ME community today. Perhaps he could put #ME so we can look out for it.

My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong. His intervention was timely and good.

The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer. People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.

That stigma can and does play a part in the development of the co-morbid symptoms of depression and anxiety, particularly for young people—I will come on to them in a minute—who keenly feel the consequences of the resultant social isolation at that moment of their development. As we have heard, suicide is not unheard of. We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it. The hon. Member for Plymouth, Sutton and Devonport (Luke Pollard) mentioned that MND is being talked about, and he is absolutely right. He is a very good communicator, and I think this will probably be one of his next Facebook Live sessions.