ME: Treatment and Research

Luke Pollard Excerpts

Thursday 21st June 2018 Westminster Hall

[Luke Pollard (Plymouth, Sutton and Devonport) (Lab/Co-op)]

I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this debate and for speaking so passionately. I stand with her and all the people affected by ME in not allowing the voices of ME sufferers to be silenced by anyone for any reason.

In Plymouth, ME affects between 500 and 1,500 people. I agree with the sentiments expressed by hon. Members in the Chamber today that it does not get the amount of attention it deserves, in many cases because of the stigma that has been attached to it for far too long. I have heard people shrug off the condition as laziness or as something in people’s heads. Attacking the stigma and the people who peddle it needs to be an important part of how we build the case for proper action on ME.

A few days ago I mentioned on my Facebook page that I wanted to speak in the debate and I asked for stories from people in Plymouth. I have done that before for various debates and have always been struck by the level of honesty and directness that comes from people simply telling their story, not as a politician but as a person. I will share some of those stories today mainly because the speeches before mine have expertly and succinctly explained the problems with the PACE trial and current treatments. I want to make sure that those voices are heard. One word came through in nearly all of the posts on my Facebook page and on my Twitter, and that word was “invisible”. People with ME feel that they are not believed, that their condition does not matter and that nothing is being done about it. I want to address what it means to be invisible and what we can do.

Jules wrote:

“Just getting up the stairs lays me out for hours. Having a shower leaves me laid out in a darkened room. I can’t work anymore (believe me not for want of trying!) I can’t do drama, Rock Choir or Zumba in fact just making a cup of tea leaves me as exhausted as Zumba used to! I lay alone at home. I live vicariously through FB. I still get out when I can but it will usually cost me days or weeks in bed. I am one of the ‘lucky’ ones. I am not totally bed bound. But I pay for this with my invisibility. I ‘look’ so well! No one can see my pain. I smile and say I am fine then go home to bed.”

The word “invisibility” is key here. People talk about it time and again in terms of how the condition affects their lives and relationships—my hon. Friend the Member for Bristol East (Kerry McCarthy) talked about that—and how it often makes them doubt their validity and whether they are telling the truth.

Several people told me about how having ME also affects their mental health, which the hon. Member for Cheltenham (Alex Chalk) talked about earlier. Catherine wrote:

“I first became ill just before my 21st birthday. I spent weeks needing to be cared for full time by my parent—including being carried by my dad because I was unable to walk. I am always in pain, have difficulty doing things that most people take for granted and lost much of my long-term memory. Long term it affects my memory and focus, my ability to function on a daily basis. I am constantly tired no matter how much I sleep. I have lost friends and needed to give up a career in teaching that I loved. I walk with a stick much of the time, especially in the winter...because my balance is bad and I fall easily. I suffer depression, bouts of anxiety”,

and

“problems that can be very embarrassing and never know whether the next flare might put me back where I started.”

ME is not simply one thing on its own. We need to recognise that mental health problems can stem from the experience of living with ME. It adds to the condition and is not just a part of the condition itself.

[Liz Twist (Blaydon) (Lab)]

Like my hon. Friend, I have heard from many constituents affected by ME who asked me to come today to make their voices heard. He made the point about invisibility earlier, but some of the people who are not able to get out do things from their beds. For example, one of my constituents organised the lighting up of the Tyne Bridge in blue last year, so there are things that people do to make sure we get the message across.

[Luke Pollard]

Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.

I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:

“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”

The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.

[Kate Green]

My hon. Friend will be interested to hear of the 17-year-old son of my constituent, who first contracted the illness as a young child. It took seven years to get a diagnosis. That is an incredibly large proportion of a young person’s life in which to suffer appalling ill health with no proper medical intervention.

[Luke Pollard]

Absolutely.

I want finally to mention Maya, who got in touch about her sister, who is affected by ME. She says:

“Chronic illnesses need far more support and recognition than they get.”

Her sister—like Maya herself, who has fibromyalgia—

“faced repeated uphill battles to get the help she needs, and that’s even been with health professionals.

It’s so little talked about that even doctors and nurses have been stumped as to how to help her. This disease cripples and takes lives and we need to be doing more.”

There is something that we can take from the debate today, which was mentioned by the hon. Member for Cheltenham in relation to brain tumour research—the fact that the power of talking about a condition can bring about change. We saw that with Baroness Jowell, and it is happening today with motor neurone disease, as it is global MND Awareness Day. People are talking about their condition. We also see it in the work on fibromyalgia being done by my hon. Friend the Member for Chesterfield (Toby Perkins). It is a matter of talking about things that are not often talked about. The importance of debates such is this is in raising awareness. People with ME are not invisible. They are as human as we are, and need to be seen and heard. That means investing in proper medical research and in medical education for practitioners, and in a relentless fight against stigma for all people with ME.

[Sir Desmond Swayne (New Forest West) (Con)]

The hon. Gentleman began by talking about stigma—the stigma of laziness or of something “in the head”. We all know that the sort of people afflicted by ME are certainly not lazy. As to its being in the head, there may be some psychological causes of ME but it is none the less an illness, and to treat it as if it were not is to reinforce the stigma that has been so damaging with respect to mental health.

[Luke Pollard]

Absolutely. I think those were the most words I have heard the right hon. Gentleman say since I was elected. He is famous for short questions. I agree entirely, and the challenge of addressing stigma is understanding, because stigma builds where there is not a clear evidence base, and there is no understanding of what is happening to an individual—we do not know whether it is one or many things. That is why medical research is essential. It is also why understanding how the condition changes day to day is important—as is the way the Government prepare and support individuals. The DWP assessments are a great example. The assessment system at the moment is built around a system that does not adequately recognise the day-to-day lived experiences of those with ME.

We can carry on the relentless fight that is needed against stigma, to encourage more research, if we keep talking about ME and remember that people who have it are not invisible. They have a voice and must be heard.

--- Later in debate ---

[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.

[Luke Pollard]

indicated assent.

[Steve Brine]

He is nodding. It is important that we raise awareness and educate people, including me, about the condition and its impact on people’s lives.

I will now turn to the two issues that have primarily been debated today, research and treatment. On research, the Government invest more than £1.7 billion a year in health research via the National Institute for Health Research and the Medical Research Council through UK Research and Innovation. The NIHR and MRC welcome high-quality applications for research into all aspects of CFS and ME, which would certainly include the biomedical research that the hon. Member for Glasgow North West spoke about in her opening remarks.

Since 2011, the MRC has funded seven projects on CFS/ME totalling £2.62 million, and it is ready to support further applications of the highest scientific quality, which is required to make those scientific breakthroughs. My hon. Friend the Member for North West Norfolk (Sir Henry Bellingham) is no longer in his place, but he spoke about the Norwich Research Park—didn’t he push that a few times?—which sounds very promising. I look forward to hearing more about it, and I feel certain that he will tell me.

The MRC has had an open cross-board highlight notice on ME since 2003. It was updated in 2011 alongside a bespoke funding call in that year. ME research remains an area of high strategic importance for the MRC. Applications that focus on the underpinning mechanisms of ME are encouraged, with priority areas including immune dysregulation—[Interruption.] Sorry, I am distracted by someone shouting about stopping something outside—I think he is saying, “Stop ME!”. The priority areas include pain, improved sub-phenotyping and stratification of ME, and mechanisms of ME in children and young people.

A number of people mentioned the late Baroness Jowell. I was very privileged to meet her. I did so just the once, but I was left in no doubt about her resolve on the issue of brain tumours. Let me say in reference to her and to the research environment that, as my Parliamentary Private Secretary, my hon. Friend the Member for South Suffolk (James Cartlidge), reminded me, that journey started around the time of a Westminster Hall debate. Perhaps that is a good sign.

Our challenge with brain tumour research is the lack of high-quality research proposals that have come forward. The late Baroness Jowell was passionate about stimulating the research community to get that situation changed, and we have latched on to that. That is one of her great legacies. I would hazard a guess that her greatest legacy is yet to be reached, but that is one reason it is important to mention her today.

The NIHR has, since 2011, provided £3.37 million of funding for projects and training on ME. That might not be termed biomedical research, but as with other disorders, given that the cause and mechanisms of the condition are still poorly understood, it is important that we carry out both biomedical research, to further our understanding, and applied health research, to improve the treatment offered to people with ME now and to help to improve their symptoms and quality of life.

The NIHR and the MRC recognise that ME is a debilitating condition and are working with the UK CFS/ME Research Collaborative, which was mentioned towards the end of the debate, and with patient representatives on how best they can support a joined-up approach to encourage high-quality research into this complex disorder. I mentioned that Baroness Jowell is a good example of how to start such research. They hope to be able to update colleagues on those discussions by the end of the year, and I for one will look keenly for that update.

For Members who do not know about that important collaboration, it was set up in 2013 to promote high-quality basic and applied research into ME. The CMRC brings together researchers, major funders and charities, and provides them with a mechanism for working together in a co-ordinated and collaborative way, increasing awareness of ME in the research community—that is so important if we are going to stimulate applications—highlighting priorities for research funding and increasing such funding. Both the NIHR and the MRC sit as observers on the CMRC board.

Everyone who contributed to the debate spoke passionately, but the hon. Member for Ealing North spoke particularly passionately, and I liked his point about humanity. This is a matter of good Christian humanity in many ways.

The Royal College of General Practitioners oversees GP training in England. It provides an online course for GPs and other primary care practitioners that includes an overview of the presentation, diagnosis, assessment and ongoing management of ME. The course highlights common misconceptions about ME and considers the challenges that surround that complex condition for patients, carers and primary care professionals. It is produced as part of the METRIC study, which is funded by the NIHR.

Of course GPs can always know more and learn more, but let me speak up for them for a moment. They are called “general practitioners”. Be a GP for a day—it is incredibly difficult to know everything about everything and to be a master of all. General practice is, though, where most patients with ME are likely to be managed, certainly in the first instance. The condition is identified as a key area of clinical knowledge in the RCGP applied knowledge test content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in England and a key part of GPs’ qualifying exams.

Although I understand hon. Members’ points about raising awareness among medical professionals, and as a result of the debate I will redouble my efforts to do that as part of my role as Minister for primary care, all GPs certainly should be aware of ME, and should maintain their clinical knowledge of it and other conditions, as part of their commitment to continuing professional development. Indeed, I have resolved—I have already sent a note to myself—to send a copy of the report of the debate to Professor Helen Stokes-Lampard, who currently leads the RCGP, and to ask for the college’s latest thinking about this subject.

Before any medical condition can begin to be treated, it must be diagnosed. That goes to the heart of our challenge. As the symptoms of ME often resemble those of many other debilitating illnesses—we heard about Lyme disease—there is no test with which to make an accurate diagnosis. ME, therefore, is not always easy to diagnose, to put it mildly. Diagnosis relies on clinical observation of symptoms by healthcare professionals. We understand that that can be frustrating, to put it mildly, for patients—and, it must be said, for their clinicians.

People with ME should be referred to a specialist service, where care should be based on their needs, on the type, complexity and severity of their symptoms, and on the presence of co-morbidities. That decision should be made jointly by the patient and their healthcare professionals. As the shadow Minister said, referral to specialist ME care should be offered within six months of presentation to people with milder symptoms, within three to four months of presentation to people with moderate symptoms, and immediately to people with severe symptoms. Clinicians are responsible for advising patients about available treatment options.

Of course I am aware that access to services for those with severe ME is a big and ongoing issue. Under the Health and Social Care Act 2012, the configuration of services is a matter for local NHS commissioners, who have to be best placed to deliver services for their area. A number of Members referred to the report of the chief medical officer’s independent working group on ME, which was published in 2002. Following that, a central investment programme of £8.5 million was established to address the service gaps across England—I am responsible for the NHS in England. That included the establishment of 13 centres of expertise across the country, 36 multidisciplinary community teams for adults and 11 specialist teams for children and young people, and facilitation of access to advice on clinical management for patients, families and health professionals.

Linked to that—the Department is, of course, now called the Department of Health and Social Care—the vast majority of people with severe ME and their families will come into contact with social care services at some point. The Care Act 2014 requires a local authority to carry out a needs assessment where an adult or carer appears to have care and support needs. The local authority must then decide whether the person has eligible needs by considering the outcomes they want to achieve, their needs, and how those impact on their overall wellbeing. Where a person is assessed as having eligible care and support needs, those must be met by their local authority.

Let me say some more about children and young people, who were mentioned by a number of Members. There is a powerful moment in “Unrest” where a young lady is celebrating her birthday. She says, “I remember my 16th birthday in this bed, and my 17th birthday, and my 18th birthday”—and she goes on through; I think she was celebrating her 22nd birthday in the film. Although access to services was raised, I know that access to education is also a huge issue for children and young people with ME.

All schools have a legal duty to make arrangements to support pupils with a medical condition in school. Guidance to schools states that they should put in place arrangements that show an understanding of how medical conditions affect a pupil’s ability to learn and give parents and young people confidence in the school’s ability to provide effective support for their condition. Children and young people with ME should have an individual healthcare plan, which should normally be drawn up in partnership with the school, healthcare professionals, parents and the young person, and should be tailored to their needs.

Schools and other services should work together to ensure that children and young people with ME receive an education that is flexible and appropriate. That could mean programmes of study that rely on part-time attendance, in combination with alternative provision or home schooling, which was mentioned. Consideration should also be given to how children and young people are integrated back into school after a period of absence, when they are feeling better and, hopefully, more able physically to cope.

A lot was said about NICE guidelines, which are clearly a sensitive topic and a source of much unhappiness among Members and the wider ME community. According to NICE guidelines, recommended treatments for ME include cognitive behavioural therapy and graded exercise therapy. I know that many patients disagree with those treatments, and we heard powerful testimony about that. The NICE guideline is clear that there is no one form of treatment to suit every patient; that the personal needs and preferences of the patient should be taken into account; that doctors should explain that no single strategy will be successful for all patients; and that, in common with all people receiving NHS care, ME patients have the right to refuse or withdraw from any part of their treatment that they do not agree with or they think is doing them harm.

As we heard, the NICE guideline is being updated—a jolly good job, too. NICE will look at the current evidence base, including the PACE trial, which has been debated at length in the House before. Of course, we welcome NICE’s decision to undertake a full review of ME guidelines. Many of the ME charities we have heard about today are registered to take part in the guideline development process, but NICE is the independent expert body responsible for developing robust, evidence-based guidance for the NHS to design services that are in line with the best available evidence, and no one should hide from the evidence. It would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.