Meeting of the Parliament

Meeting date: Thursday, May 11, 2017

Official Report 912KB pdf

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International ME Awareness Day

The next item of business is a members’ business debate on motion S5M-05038, in the name of Gail Ross, on 12 May, international ME day. The debate will be concluded without any question being put.

Motion debated,

That the Parliament acknowledges that 12 May 2017 marks the international awareness day for myalgic encephalomyelitis (ME), which is commonly known as chronic fatigue syndrome; understands that ME is often labelled as a "silent" illness but can bring great mental and physical exhaustion to those living with it; believes that over 20,000 adults and children in Scotland have the condition and that the effects include cognitive impairment, poor short-term memory, muscle and joint pain, gastrointestinal problems and food intolerance; commends the work of the various charities across Scotland and beyond in highlighting the circumstances faced by people with ME, and commends them on the support that they offer.

12:49  

Tomorrow—12 May—is international ME awareness day. Myalgic encephalomyelitis—or chronic fatigue syndrome, as it is known in the national health service—is a chronic neurological disorder that affects more than 21,000 adults and children in Scotland. We have no idea how many people remain undiagnosed or misdiagnosed. The symptoms range from mild to moderate, and can be extreme in some cases. They include exhaustion and fatigue, particularly after a period of what can sometimes be just mild exertion, chronic pain, sleep disturbance, flu-like symptoms including headaches and sore throat, dizziness, nausea, and problems with memory and concentration, which is known as brain fog. Sufferers can also present with gastrointestinal difficulties, food intolerances, nerve pain and muscle weakness.

ME can affect people in different ways, and the symptoms can fluctuate over time. Some people cope, but some—for example, Emma Shorter from Edinburgh—are forced to use a wheelchair and are rarely able to leave the house. Two thirds of Scottish patients with ME have been ill for over 10 years, and fewer than one in 10 is in full-time work, education or training.

There is no cure, but some sufferers spend thousands of pounds on so-called snake-oil treatments that promise various outcomes, and many are disappointed when their symptoms fail to improve.

Although treatments such as cognitive behavioural therapy can help with managing the psychological and emotional impact of symptoms and many people find them beneficial, we cannot keep up the practice of treating ME as a psychological illness: it is not all in the mind.

We also know that ME is often misdiagnosed. That can be due to symptoms being similar to those that are present in a number of other medical conditions and there being no definitive findings that confirm the diagnosis. That means that there has often to be a process of elimination of other conditions before a diagnosis of ME or CFS can be made.

Depression is a common symptom of the illness; many ME sufferers fall into a depressed state because of their symptoms. They yearn for their former life and the things that they used to be able to do, and many have lost jobs and friends, or simply despair at not being taken seriously. The incidence of suicide among people with ME is six times higher than it is in the general population. Most people never know what causes their ME. It is thought that it can be triggered by infection, or it can develop over a number of years. It is also thought to be brought on by periods of extreme stress.

One of my very good friends had hoped to be in the gallery today but, unfortunately, she could not be. However, she has given me permission to tell members about her struggle. Her name is Sally. In 2012, Sally went to a doctor to complain of neck pain and nerve pain. She was also physically exhausted. She has shorn sheep in New Zealand, so she knew that her body was telling her something. The doctor told her that it might be breast cancer or a herniated disc, so she was sent for a magnetic resonance imaging scan. The scan came back clear. She continued to have nerve pain, fatigue and extreme exhaustion, and she also began to have problems with her sight.

She went back to the general practitioner, who did blood tests to rule out anything straightforward. Nothing showed. The GP suggested that it might be something more serious, such as multiple sclerosis, so her parents paid for her to go private for another MRI and a lumbar puncture. However, it was not MS. She was given amitriptyline, which nearly knocked her out, and she was given gabapentin and a mild dose of fluoxetine to help her sleep.

Sally’s symptoms continued for two years until she went to see a doctor who specialises in tropical medicine. The doctor diagnosed Q fever, which is a bacterial infection that is picked up from animals. It is so rare that there are no specialists who deal with it in the United Kingdom. She was also diagnosed with ME. There are no ME specialists in the UK, either.

Sally tells me that she is lucky. She is pretty certain now that the Q fever was the cause of her ME, but most people never know the cause. She had to go to Belgium to see a specialist, and she has started a long course of antibiotics, which will last for three years, cost her in excess of £20,000, and be paid for by credit cards, because she cannot work.

She applied for disability living allowance—now called personal independence payments—but she was told that she does not qualify because she is not ill enough, despite having days when she cannot even get out of bed. She applied for employment support allowance instead and was made to go through what she describes as a humiliating assessment, in which she was made to feel ashamed, as if she was making it all up. The Maximus assessor told her that Maximus does not recognise ME as an illness. She felt degraded, demoralised and looked upon as a liar. What a disgrace. I am proud to say that private companies will have no part in the Scottish social security system, which will have fairness, dignity and respect as its core values.

My friend fully believes that her symptoms would not have escalated as they did if her diagnosis had been made earlier. She copes now, but every day is different and some days are better than others. My friend Sally has few demands, and none that is insurmountable.

In its Scotland manifesto, Action for ME set out the following goals:

“• Training for all professionals providing health, care and support services to people affected by M.E., linked to the establishment of a national professional network.

• Access to a fair and effective welfare system that meets the needs of people with chronic fluctuating and cumulative symptoms.

• Timely and informed support to help those people with M.E. who have capacity to access employment, education or training opportunities.

• All carers have access to timely, holistic support and that their needs are routinely considered by health and care professionals.

• Every person living with M.E. – including the most severely affected – has access to a person-centred care plan including ongoing monitoring and support, and specialist diagnostic and condition management services.”

Tomorrow, an organisation called Missing Millions will be placing pairs of shoes outside Parliament to symbolise people who are affected by ME and the lives that they are missing out on, as well as the huge contribution that society is missing due to their illness. I thank the organisation for helping to raise awareness of ME and the many people who suffer from it.

I also thank Action for ME, Invest in ME, the ME Association, the Young ME Sufferers Trust and all the individual people who contacted me about today’s debate, including those who are in the gallery or watching at home. Their stories are both heartbreaking and inspiring.

I will leave you with a direct quotation from my friend, Sally:

“Society tells us to push through ... and many people do when the best course of action is to listen to your body and rest. Take as long as you need. But sometimes by the time ME is diagnosed the time for rest has passed. When a diagnosis is made you have to accept it. You HAVE to give yourself time. But other people need to accept it as well. So many people with ME struggle on — it's time this so called ‘silent illness’ is silent no longer.” [Applause.]

Thank you very much. As I have said before, I understand why visitors sitting in the gallery want to applaud, but it is not permitted in the Scottish Parliament.

12:58  

I am pleased to make a speech in this afternoon’s debate. I remind members that I am a nurse. I was keen to speak in the debate, not just to support my colleague Gail Ross but because I have received several emails asking me to raise awareness of ME from constituents with family members who have been diagnosed with the condition.

ME is arguably one of the least understood diseases. The most common form in humans is called chronic fatigue syndrome—CFS. It affects young people and older adults. I find it interesting that GPs prefer to call it chronic fatigue syndrome rather than ME, because there are lots of different symptoms that are not necessarily just inflammatory processes around the spinal cord and brain.

Many people do not realise that the disease can be triggered by a bacterial infection or a viral infection, such as glandular fever. It can start suddenly, following the process of infection. It most commonly affects adults in their 20s and 30s, although younger children between the ages of 13 and 15 have also been diagnosed with CFS.

A disproportionate number of women are diagnosed with the disease, which is very debilitating. In the past couple of weeks, I have learned much more about it, as I have been contacted by constituents. I certainly know a lot more about it now than I did as a practising clinician. It does not mean that people are just tired all the time, and that does not give us an answer to the disease or tell us the way to treat it. The symptoms include muscle fatigue, problems with memory and attention span and just feeling under the weather generally. It can affect every aspect of people’s daily lives. GPs say that, in managing the illness, it is important to have the correct balance between activity and rest and the correct medication to treat pain and sleep disturbance. The sensible use of complementary therapies is also recommended.

It is a common view that ME is more of a psychological complaint than a physical one. That point of view is deeply harmful, as ME is not psychological—it is physical. The attitudes of some GPs have been brought into question. The evidence points to a disparity in attitudes and some judgmental processes in the way that people engage in treatment of it. GPs who are empathetic and demonstrate acceptance of their patients’ suffering are more likely to make an accurate diagnosis.

I recently read a paper in the New Scientist that highlighted the latest evidence that ME or CFS is not psychological and in fact relates to the body’s inability to correctly metabolise high-energy carbohydrates. Some people seem to be processing fats and amino acids, which are low energy yielding and release lactic acids when energy carbs are being metabolised. That lactic acid can build up in the muscles and consequently cause pain. The article described ME or CFS as an autoimmune disorder, which was my initial understanding of it. Studies such as the ones mentioned in the New Scientist are important to validate the lived experiences of people suffering from ME or CFS, and to encourage a shift in the minds of researchers from viewing the disease as psychosomatic to seeing it as a real physical disorder.

The disease is notoriously underresearched. In 2011, the president of the Royal College of Psychiatrists, Simon Wessely, told the journal Nature that most researchers would rather work on certain images than on ME or CFS. I hope that the recent shift in attitude will in turn bring more funding for vital research. I am pleased that the Scottish Government has funded a 12-month project, inform ME Scotland, which is run by Action for ME and which will reach out to health and social care professionals and engage them in dialogue about how to improve the support that is available for people with ME.

We can see clearly that more needs to be done. I look forward to more research being conducted as we raise awareness of this debilitating disease that many people suffer from in silence, so that we can get them more help.

13:03  

I thank Gail Ross for using her members’ business debate to bring this topic to the chamber. I find speaking in members’ business debates to be one of the more rewarding contributions to make. They often give us the opportunity to highlight amazing work being done by people across Scotland that might not otherwise be recognised or, as is the case today, the chance to discuss an important issue that deserves greater recognition.

I hope that today’s debate, and international ME day, which is tomorrow, will be a step towards correcting that lack of recognition. Not that long ago, ME was dismissed by many as yuppie flu, and sufferers were written off as lacking stamina or dismissed as malingerers. Arguably, that image has not been helped when ME is often described as chronic fatigue syndrome because, in my opinion, that can leave people with the sense that they understand the effects of the disease.

Almost anyone will say to you that they know what it is like to be fatigued. Speak to anyone after they have run a marathon and you will find someone who thinks that they have a good idea of what fatigue is like. However, for those with ME, that kind of fatigue can be an almost everyday occurrence, often provoked by the most minor physical activity. It would be difficult, if not impossible, for someone without the condition to genuinely understand the impact that it can have on someone’s life. We need to encourage greater understanding and recognition of those with ME, because it is only through recognising and understanding the condition properly that we can begin to improve the lives of those living with it.

Like mental illness, ME can be invisible to others. In recent years, though, we have seen our attitudes to mental illnesses evolve and improve, thanks to the work of dedicated campaigners and to politicians who are more willing to speak out. Conditions that were once something to be hidden by sufferers who were fearful of being stigmatised or ostracised through the ignorance of others are now accepted. Because of that, not only are people with mental health conditions getting the kind of help and support that they need, they are able to concentrate on how they are feeling rather than how they are seen.

I hope that this debate can be an opportunity to change how we perceive ME and to help sufferers to make that same kind of progress. Some of that work has already begun, through events such as tomorrow’s international ME awareness day and the tireless campaigning by groups such as Action for ME and the ME Association. I also note that the Scottish Government has provided funding towards the mentor ME project that is being run by Action for ME.

However, although those steps are welcome, it is clear that much more needs to be done to give ME sufferers and their families the support that they need. Key to that support is the NHS; the availability of specialised treatment and support in the NHS is, to say the least, patchy. Chronic conditions such as ME will inevitably lead to sufferers having to interact more with the health service than they otherwise might. That being the case, it concerns me to find that the level of support that is on offer to patients with ME and their carers varies so significantly across the country. One statistic that I found particularly shocking was that Scotland has precisely one ME nurse. To put that into a context that I know we all understand, Scotland has twice as many pandas as ME nurses. Although I must pay tribute to NHS Fife for its decision to provide an ME nurse, I am baffled as to why no other NHS board has chosen to create a similar post.

Beyond the NHS, we need to do more to allow people with ME to lead as normal a life as possible. We have to do more to support people with ME to be active and productive. Employers need education and encouragement to recruit and retain staff with ME, offering flexible hours or home working. Setting goals, having things to do every day and keeping their minds active are all useful tools that allow people with ME to better manage their condition. Having ME should not be a reason to put limits on an individual’s ambition.

There are few things in life as disheartening and isolating as dealing with a chronic illness, particularly when that illness is not easy to see or well understood. I began by suggesting that members’ business debates are a way of drawing attention to less well-known issues and I hope that we have succeeded in doing that for ME. However, in this case recognition is not enough. We need action too, and I hope that both the Scottish Government, and the Scottish Parliament more widely, will take action to change the lives of Scots living with ME.

13:08  

I join other speakers in congratulating Gail Ross on bringing this important debate to the chamber and shining a light on ME. Tomorrow we will mark international ME awareness day, and the reason why that date was chosen is that it was the birthday of Florence Nightingale; it is believed that Florence Nightingale was a sufferer of ME. By coincidence, because of the link with Florence Nightingale, tomorrow is also international nurses day, in recognition of the immense contribution that healthcare workers make to people, not just in the United Kingdom, but right around the world. It is an important day on which to mark the challenges faced by people with ME.

As Gail Ross said, 21,000 people in Scotland are believed to have ME and almost a quarter of a million people across the whole UK. ME is also commonly known as chronic fatigue syndrome and, as has already been mentioned, is quite often misdiagnosed because many of the symptoms, such as fatigue, painful muscles and joints, disordered sleep, gastric disturbance, poor memory and poor concentration, are the same as for other conditions. An ambition that all of us share is for all individuals, regardless of any conditions that they may have, to live full and fulfilling lives. That should be an ambition for all sufferers of ME, too.

One good way in which ME has been described to me is as being like having a battery and having to work out how to preserve your energy—which sometimes will be high and sometimes will be low—to maintain the battery whenever it might be in the day. The functional ability scale, as it is known, is something that young sufferers of ME, in particular, use to get by day to day.

On days such as this, it is important to recognise the work of the third sector organisations that do so much to highlight causes such as ME. I pay special tribute to the ME Association, Action for ME and, in particular, the Young ME Sufferers Trust, which helps to provide information to young sufferers of ME about how they can make a difference in their own lives.

I am sorry that we will not be here tomorrow for the Missing Millions protest. I hope that the issue is highlighted both in the media and, in particular, on social media, so that we can share the message.

I want to reflect on a piece from an ME sufferer, Emma Shorter, which I read this morning in the Edinburgh Evening News. Emma is just 23 years old and she was highlighting not just the everyday challenges that she faces as an ME sufferer, but what we, as parliamentarians, and the Scottish Government can do to make a meaningful difference, including the need for a “dedicated helpline and website”, funded by the Scottish Government. That would be welcome and, I know, was part of a strategy published by the Scottish Government in 2011. She spoke also about the need to directly

“fund biomedical research into ME”

right here in Scotland, to provide the gold standard for challenging ME and supporting ME diagnosis and treatment for other parts of the world. That would be a very welcome commitment from the Scottish Government.

We have also heard about a lack of knowledge on the part of healthcare professionals and clinicians because of how rare the condition is, so there is an issue around how we can properly educate our healthcare professionals at all levels so that they can adequately diagnose, treat and manage ME.

I want to highlight some of the daily impacts that ME has, particularly on children and young people but also on adults later in life. It has an impact on their health and their ability to access their GP; the GP having adequate knowledge to support the individual is also an issue. It has an impact on their education, whether on their studying, their concentration at school or their exams, and the consequences of that can have an impact later on in life. A related point is how we properly educate schoolteachers, lecturers and others on how they can support students who have ME, so that they, too, can maximise their potential. It has an impact on their family life, for example on parents and siblings—it must surely cause parents anxiety when they realise that their child has ME—and it affects their social life.

The one plus, perhaps, is that the majority of young people and children go on to recover fully from ME; they do not live with it for the rest of their lives. If someone has ME when they get into adult life, however, it has an impact on employment and employability. It is a matter of how we can better educate employers to help them to support any sufferers of ME that they may have in their workforce in relation to their day-to-day work and the impacts on leave and sick leave.

I again thank Gail Ross for bringing this important topic before the Scottish Parliament. I hope that we can all resolve to highlight this important cause, to challenge the stigmatisation of chronic fatigue and ME and to work harder to provide better diagnosis and treatment for all.

13:13  

I am delighted to contribute to this debate on a subject that affects thousands of fellow Scots and almost 250,000 people across the UK. There is no known cure for ME and no proven treatment that can be guaranteed to work for everyone. Some people do recover from ME, but their recoveries may not be directly attributed to any particular regime or treatment. However, it is recognised that there are treatments and services that can offer real relief to some people with ME.

ME awareness week began on 10 May, and the toxic legacy of McEvedy and Beard must be revisited. A paper written by the two psychiatrists in 1970 has influenced medical, public and media perceptions of ME as an illness for decades. For ME awareness week, the press officer Sarah Staples argues that it is a story that every patient with ME needs to know and share. It has been claimed that it would almost be funny if its effects had not been so tragic.

ME is a disease defined by a flawed 40-year-old study, in which no patients were interviewed and which concluded that ME was mass hysteria, because many of those affected were women. McEvedy and Beard even suggested that the disorder be called “myalgia nervosa”, which is quite unbelievable when one starts to realise the suffering that affected people endure. Ask anyone—male or female—who has ME and they will tell you their own horror story of the day when a doctor told them to go home, take an aspirin and rest or the time when a taxi driver taking them to college joked, “It’s only a short walk,” implying that they were lazy.

One sufferer in Falkirk described how, on some days, she could only get down the stairs by bumping down on her behind and get back up by crawling on her hands and knees. Others cannot even get out of bed. Another sufferer in my own region described it as like getting up after a night on the tiles with a bad hangover.

ME—also sometimes referred to as chronic fatigue syndrome—affects about 250,000 people, children as well as adults, here in the UK. About 25 per cent are severely affected, meaning that they are wheelchair-bound, house-bound and, in some cases, bed-bound.

For children and adolescents, ME is the most common cause of long-term sickness absence from school. That means that there could be about 400 people in my region alone who are suffering from but are not necessarily diagnosed with ME. Many people with ME or CFS experience long delays, sometimes of over a year, in obtaining a formal diagnosis. As a result, they are often given inadequate or even inappropriate or harmful advice on management. That is because medical education on both the diagnosis and management of ME at undergraduate and postgraduate level is often inadequate and sometimes even non-existent.

For the 25 per cent of people who have severe ME, resulting in being either house or bed-bound, domiciliary services and in-patient facilities are almost non-existent. Like my colleagues, I have tried to illustrate how ME can have a huge and life-changing impact on sufferers, yet it remains a condition for which we are no closer to having a clinical diagnosis.

With only four out of 14 health boards providing any sort of service to ME sufferers and, as Brian Whittle has already said, just one dedicated ME nurse in Scotland, it is clear that much more needs to be done to assist those who are suffering and that much more vital research is needed to understand this illness. We must look worldwide at the whole issue surrounding ME.

I thank Gail Ross for lodging a members’ business motion on this vitally important issue and I hope that the debate and all the events that are scheduled around ME awareness week do much to raise awareness of the issues that ME sufferers endure daily.

13:17  

I am pleased to have the opportunity to close today’s debate marking international ME awareness day 2017, which is on Friday, and ME awareness week. I thank Gail Ross for bringing the issue of ME to the chamber, and I thank Anas Sarwar for providing valuable context on why the date was chosen by explaining the link to Florence Nightingale.

It is clear from listening to members’ speeches that ME remains a condition that many people do not understand, and many do not appreciate the impact that it can have on the lives of those who live with it. Gail Ross articulated very clearly the severe and significant health implications for those who suffer from ME, including the physical deterioration—which, in the case of Emma Shorter, means that she is physically unable to leave the house—and the mental health issues that the condition can cause. We need to recognise sufferers’ wellbeing needs by treating those mental health issues.

The story of Gail Ross’s friend Sally is an illustration of how the condition presents itself. We heard about the long, unfortunate journey that Sally had to embark on until diagnosis, the escalation of her condition, and the physical, mental and financial toll that it has taken on her. She is finally on a path that will, I hope, help her to get better.

All members’ contributions are important in ensuring that, together, we can raise awareness of ME and the issues that it causes. As a Government, we believe that everyone who lives with ME should have access to the care and support that they need. That should be aided by our £2.5 million recurring investment in specialist nursing. I concede and accept that there are issues, but that investment should help to bring about improvements. Of course, we need to do more. We recognise that support is needed for the families and carers of those with ME. To that end—again, this is an issue that was raised by Anas Sarwar—third sector partners also play a crucial role and that role should be recognised. They act as powerful advocates for people with ME, and they deliver high-quality services and support to people who have the condition.

The Scottish Government has a good relationship with Action for ME, which is the UK’s leading third sector organisation in the field. Over the past year, we have been working closely with Action for ME, and I am pleased to say that we have recently been able to provide funding to the organisation and to support its inform ME Scotland project, which will reach out to health and social care professionals and engage them in discussions about how to bring about positive change in the health and social care support that is available to people with ME. Gail Ross and Emma Harper spoke about the real need for greater understanding and knowledge of ME among our medical and social care staff. I hope that Gail’s friend Sally will take some comfort from the fact that her words can help to influence how medical professionals respond to the condition.

That is why the funding that we have provided to Action for ME to help to support a project that aims to improve healthcare pathways and health outcomes for people with ME is so important. The project also aims to promote education on the condition among healthcare professionals, including through round-table discussions, the production and dissemination of professional briefings, and the delivery of specialist webinars. It will seek to bring about positive change in the health and social care support that is available. Again, I am happy to keep Gail Ross updated on how that work progresses.

Action for ME is also about to undertake a five-year peer mentoring project, which has been made possible with substantial grant funding of more than £300,000 from the Scottish Government’s transforming self-management fund. The aim is to build confidence and reduce isolation among people who are affected by ME and—just as importantly—among their carers. The project will develop a peer-mentoring, self-management support network across the country. I believe that Government support for both those projects should be seen as a sign of our commitment to improving health outcomes and quality of life for people in Scotland who live with ME.

At national level, our national advisory committee for neurological conditions is looking at models of care that represent the improvements that we want, such as person-centred care and support, with care provided by skilled nurses, therapists, doctors and care teams; better access to specialist services; and opportunities to participate in research into new treatments. Action for ME recently met officials from the national advisory committee and it is currently exploring how it can work collaboratively going forward.

Some members raised the topic of research as particularly pertinent to ME. I reiterate that I recognise the work of third sector organisations, including Action for ME, in raising the research profile of the disease. Officials from the chief scientist office would be happy to meet the charity to discuss areas of mutual interest. Applications for research on the underlying causes, diagnosis and treatment of ME are welcomed; in common with all other applications, they would go through the CSO standard independent peer review process. I hope that that offer from the CSO will be taken up.

Gail Ross referred to the often heartbreaking interaction that ME sufferers have with the Department for Work and Pensions. I am proud of this Government’s commitment to build a fairer system by designing an assessment process that prioritises the needs of the person rather than the needs of those who are delivering the assessment. For those with long-term conditions such as ME, we will introduce long-term awards and, wherever possible, assessments for those awards will be paper based rather than face to face. We will stop the revolving door of assessments that have caused so much stress and anxiety, and which certainly do not do any good for people who suffer from conditions that are exacerbated by such stress and anxiety. That is in stark contrast to the experiences that people recount in relation to the DWP, and that is why we will continue to develop a system that puts equality and respect at the heart of our approach.

In closing, I thank members for their thoughtful and very personal remarks throughout the debate. It is important that we continue to strive for improvements in all aspects of care for people with ME, and there is certainly much more that we need to do. We must—and we will—keep looking at how we can do better; how we should transform and improve care; and how we can equip ourselves to deliver even better health and social care services in the future for those who live with ME or any other long-term condition.

We have a hugely committed and professional workforce in our national health service. With the continued support and hard work of everyone who is involved, I am confident that we can continue to improve care and provide better support for people who are living with ME. I hope that we can ensure that there is no longer silence on the condition and that, by working together across party-political boundaries, we in Parliament can say loudly that we are committed to making improvements for people with ME.

Once again, I thank Gail Ross and other members for a very informed, insightful and illuminating debate.

13:24 Meeting suspended.  

14:30 On resuming—