 Can I ask members of the public leaving the gallery to do so quietly, as the Parliament is still in session? The next item of business is a member's business debate on motion 5038, in the name of Gail Ross. On 12 May, International ME Day, the debate will be concluded without any questions being put. Can I ask those members who wish to speak in the debate to press the request-to-speak buttons now? I call on Gail Ross to open the debate. Ms Ross. Tomorrow, May 12, is International ME Awareness Day. Myalgic encephalomyelitis, or as it is known in the NHS, chronic fatigue syndrome, is a chronic neurological disorder that affects over 21,000 adults and children in Scotland. We have no idea how many people remain undiagnosed or misdiagnosed. Symptoms can range from mild to moderate and, in some cases, can be extreme. Those can include exhaustion and fatigue, particularly after a period of what can sometimes be just mild exertion—chronic pain, sleep disturbance, flu-like symptoms such as headaches and sore throat, dizziness, nausea, problems with memory and concentration, known as brain fog. Members can also present with gastrointestinal difficulties in food intolerances, nerve pain and muscle weakness. It can affect people in different ways, and symptoms can fluctuate over time. Some people cope, some, like Emma Shorter from Edinburgh, forced to use a wheelchair and rarely able to leave the house. Two thirds of Scottish patients with ME have been ill for more than 10 years. Fewer than one in 10 are 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, but 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 that 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 can often be misdiagnosed. That can be due to the fact that symptoms are similar to those present in a number of other medical conditions, and there are no definitive findings that confirm a diagnosis. That means that there often has 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 depressive state because of their symptoms. Earning for their former life and the things that they used to be able to do, many have lost jobs and friends, or simply despair at not being taken seriously. Instances of suicide in people with ME are six times higher than in the general population. Most people never know what causes their ME. It is thought that it can be triggered by infection or that 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 here in the gallery today, but unfortunately she could not, but she has given me permission to tell you about her struggle. Her name is Sally. In 2012, she went to a doctor complaining of neck pain and nerve pain. She was also physically exhausted. This woman has shorn sheep in New Zealand, so she knew her body was telling her something. The doctor told her that it might be breast cancer, it might be a herniated disc, so she was sent for an MRI scan. It came back clear. She continued to have nerve pain, fatigue and extreme exhaustion. She was also beginning to have problems with her sight. She went back to the GP who did blood tests to roll out anything straightforward. Nothing showed. The GP suggested that it might be something more serious like MS, so her parents paid for her to go private for another MRI and a lumber puncture. It was an MS. She was given amatryptoline, which nearly knocked her out. She was given gabapentin and a mild dose of phloxatine for her sleep. Her symptoms continued for two years until she went to see a doctor that specialised in tropical medicine. The doctor diagnosed Q fever, a bacterial infection picked up from animals, so rare that there are no specialists that deal with it in the UK. She was also diagnosed with ME. There are no ME specialists in the UK either. She 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. She had to go to Belgium to see a specialist and has started a long course of antibiotics that will last for three years and cost her an excess of £20,000, paid for by credit cards, because she could not work. She applied for disability 11 allowance or personal independence payments as they are now, but she was told that she did not qualify because she is not ill enough despite having days where she cannot even get out of bed. She applied for employment support allowance instead, and she was made to go through what she describes as a humiliating assessment where she was made to feel ashamed like she was making it up. The maximus assessor told her that they do not recognise ME as an illness, degraded, demoralised and looked upon as a liar, what a disgrace. I am proud to say that these private companies will have no part of a Scottish social security system with fairness, dignity and respect as its core values. She fully believes that if the diagnosis was made earlier, then her symptoms would not have escalated the way they did. She copes now, but every day is different, and some days are better than others. My friend Sally has few demands and none that are insurmountable, and in her Scotland manifesto, action for ME set out the following goals. Training for all professionals providing healthcare and support services for people affected by ME linked to the establishment of a national professional network. Access to a fair and effective welfare system that meets the needs of the people with chronic fluctuating and cumulative symptoms. Timely and informed support to help those people with ME 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 healthcare professionals. Every person living with ME, including the most severely affected, has access to a person-centred care plan, including on-going monitoring and support and specialist diagnostic and condition management services. Tomorrow, an organisation called Missing Millions will be placing pairs of shoes outside the Parliament to symbolise some of the people affected by ME and the lives that they are missing out on, as well as the huge contribution society is missing out on due to their illness. I would like to thank them for helping to raise awareness of ME and the many people who suffer from it. I would also like to thank Action for ME, Invest in ME, ME Awareness, the Young ME Sufferers Trust and all the individual people that contacted me about this debate today, including those in the gallery and watching at home. Your stories are both heartbreaking yet inspiring. Presiding Officer, I would like to leave you all with the direct quote 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 you have a diagnosis, 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 is time that so-called silent illness is silent no longer. Thank you very much. As I have said before, I understand why people in the gallery applaud, but it is not permitted in the Scottish Parliament. I understand why you want to do it. I now call Emma Harper to follow by Brian Whittle. I am pleased to contribute to this debate this afternoon and remind chamber that I am a nurse. I was keen to speak in today's debate not just to support my colleague Gail Ross, but also because I have received a number of emails from constituents with family members who have been diagnosed with ME and they are asking me to help raise awareness of this also. ME is arguably one of the least understood diseases. The most common form in humans is called chronic fatigue syndrome or CFS. It affects young people and older adults. One of the things that I found very interesting is that GPs prefer to call it chronic fatigue syndrome because there are lots of different symptoms that cover it not necessarily just inflammatory processes around the spinal cord and brain. Many people do not realise that this disease can be triggered by a virus or a bacteria such as a viral infection such as glandular fever. It can start suddenly perhaps following an infective process and most commonly affects adults in their 20s and 30s, although there are younger children between the ages of 13 and 15 that also have been diagnosed as well. There is a disproportionate number of women diagnosed with the disease. It is very debilitating in this condition. In the last couple of weeks, I have learned so much more about it as we were contacted by our constituents. I certainly know a lot more about it now than I have done as a practising clinician. Just being tired all the time is not the answer to this disease or the way that we treat it. The muscle fatigue, the problems with memory and attention span and just feeling under the weather generally are part of the symptoms, but that can affect every aspect of people's daily lives. The GPs say that the way to manage the illness is quite important and the correct balance between activity and rest and correct medication to treat the pain and sleep disturbance and sensible use of complementary therapies is also recommended. It is a common view that ME is more of a psychological than a physical complaint. It is deeply harmful from the point that the attitude towards people is not a psychological disease, it is actually physical. The attitudes of some GPs have been brought into question. The evidence points that there is a bit of disparity and some judgmental processes around the way in which people are engaged in treatment. If we have GPs that are empathetic and demonstrate acceptance of their patients' suffering, they will be more likely to make an accurate diagnosis. I was interested to read a paper in the new scientist and the latest evidence arguing that ME or CFS is not psychological was highlighted in that paper. The fact relates to the body's inability to correctly metabolise carbohydrate or high energy carbs and that sometimes those people seem to be processing fats and amino acids, which are low energy yielding and release lactic acid when those energy chemicals or energy carbs are being metabolised. The lactic acid can build up in the muscles and consequently cause pain. In the same article, ME described chronic fatigue syndrome as an autoimmune disorder. Originally, that was my initial understanding of this. The studies and one in the new scientist that I looked at was very important to validate the lived experiences of the people suffering from ME or CFS, but encouraging a shift in the minds of researchers from viewing the disease as psychosomatic and changing that view to make it a real physical disorder. To date, the disease is notoriously under research, and in 2011, the president of the Royal College of Psychiatrists, Simon Wesley, told the Nature Journal that most researchers would rather work on other images than research ME or CFS, and this recent shift in attitude will in turn bring more funding, hopefully, for the vital research that is needed. I am pleased that the Scottish Government has funded a 12-month project run by Action for ME in Form ME Scotland, which will reach out to health and social care professionals and engage them in the dialogue about how to improve the support that is available for people with ME. We can see clearly that more needs to be done, and I look forward to more research being conducted as we raise more awareness of ME and the debilitating disease that many sufferers suffer in silence so that we can get them some more help. I thank Gail Ross for using her member's debate to bring this topic to the chamber. I find speaking in members' debates one of the more rewarding types of contributions to make. Often they give us the opportunity to highlight amazing work being done by people across Scotland that might not otherwise be recognised, or in this case we have the chance to discuss an important issue that deserves greater recognition than it receives. It is my hope that today's debate and international ME day tomorrow will be a step towards correcting that lack of recognition. It was not that long ago that ME was dismissed by many as yuppie flu. It suffers 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, and in my opinion that can leave people with the sense that they understand the effects of this 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 looks like. 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 it can have on their life. We need to encourage greater understanding and recognition for those with ME, because it is only through recognising and understanding this condition properly that we can begin to improve the lives of those living with it. Deputy Presiding Officer, like mental illness, ME can be invisible to others. In recent years, we have seen our attitudes to mental illness evolve and improve thanks to the work of dedicated campaigners and politicians who are willing to speak out. Conditions that were once something to be hidden by sufferers fearful of being stigmatised or ostracised through ignorance of others are now accepted. Because of that, people with mental health conditions are not only getting the kind of help and support they need, but they are able to concentrate on how they are feeling rather than on how they are seen. I hope that this debate can be an opportunity to change how we perceive ME and help sufferers to make that same kind of progress. Some of that work has already begun with events like 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 funds towards the mentor ME project being run by Action for ME. However, while 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. K to the support is the NHS. The availability of specialised treatment and support within 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 the otherwise might. That being the case, it concerns me to find that the level of support and 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 in context, I know that we all understand that Scotland has twice as many pandas as ME nurses. Although I must pay tribute to NHS Fife for their 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 a normal 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 homeworking. Setting goals, having things to do every day and keeping your mind active, are all useful tools to 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 a few things in life that are disheartening and isolating as dealing with chronic illness, particularly when that illness is not easy to see or well understood. I began by suggesting that members' debates are ways of drawing attention to less well-known issues, and I hope that we have succeeded in doing that for ME, but recognition in this case 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 life of Scots living with ME. Deputy Presiding Officer, can I join other speakers and first congratulate Gail Ross for bringing this important debate to the chamber and shining a light on ME? Tomorrow will mark international ME awareness day. The reason why that date is chosen is because of the birthday of Florence Nightingale. Florence Nightingale was believed to be a sufferer of ME, and just by coincidence, because of the link with Florence Nightingale, tomorrow will also be international nurses day, a recognition of the immense contribution that healthcare workers make to people not just in the UK but right around the world. It is an important day to mark the challenges that people face with ME. As Gail Ross has said, there are 21,000 people in Scotland believed to have ME, almost a quarter of a million people right across the UK, and ME is also commonly known as chronic fatigue syndrome. As has already been mentioned, quite often ME is misdiagnosed because many of the symptoms are the same as for other conditions. For example, fatigue, painful muscles and joints, distorted sleep, gastric disturbance, poor memory and poor concentration. An ambition that all of us share will be for all individuals, regardless of what conditions they may or may not have, to live full and fulfilling lives. That should be an ambition for all sufferers of ME. A good way that ME was described to me was to imagine that it was like a battery. Sometimes you had a high energy, sometimes you had low energy and you had to try and work at how to preserve your energy to maintain that battery, whether that be through the day. It is something that is known as the functional ability scale. It is something that particularly young sufferers of ME use on a day-to-day basis to get by. It is important on days like this to recognise the work of third sector organisations that do so much to highlight causes like the ME. I want to pay particular tribute to the ME association, to action for ME and, in particular, to the young ME sufferers trust, who help 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, but I hope that it is highlighted in the media, particularly on social media, so that we can help to share that message. I want to reflect on a piece that I read this morning in the Edinburgh evening news from an ME sufferer, Emma Shorter, who is just 23 years old. She was highlighting not just the everyday challenges that she faces being an ME sufferer, but what we as parliamentarians and what the Scottish Government can do to make a meaningful difference. She was talking about how we should have a dedicated helpline and a dedicated website that is funded by the Scottish Government. I think that that is something that would be welcomed. I know that it was part of the strategy that was published in 2011 by the Scottish Government. She talked about how we should directly fund biomedical research into ME right here in Scotland, so that we can be the gold standard on how to challenge ME and support ME diagnosis and treatment for other parts of the world, too. I think that that would be a very welcome commitment from the Scottish Government. We have also heard about a lack of knowledge from healthcare professionals and clinicians because of how rare the condition is and how we can properly educate our healthcare professionals at all levels so that they can adequately diagnose, treat and manage ME. I want to end on some of the daily impacts that ME has, particularly on children and young people, but also on adults further in life. The impact that it has on health and the ability to access their GP and the GP to be adequately acknowledged to be able to support that individual. The impact that it has on education, whether that be around their studying, their concentration at schools, their exams and how those consequences can have an impact later on life, so how we properly educate school teachers, lecturers and so on, and how they can support students that do have ME so that they too can maximise their full potential. The impact that it has on family life, for example, on parents or on siblings, on their social life and the anxiety that it must surely give to parents when they realise their child does have ME. The one plus perhaps from it would be that the majority of young people and children go on to recover fully from ME and do not live with ME for the rest of their lives. However, if you have ME when you get into adult life, the impact that it has on employment and employability and how we can better educate employers to help to support any sufferer's ME that they may have in their workforce to support them through their day-to-day work but also how that impacts, for example, on leave and also on sick leave. I want to end by thanking Gail Ross again for bringing this important topic to the Scottish Parliament. I hope that we can all resolve to highlight this important cause to challenge the stigmatisation of chronic fatigue and of ME and to resolve to work harder to make sure that we give better diagnosis and better treatment to all. I am delighted to contribute to the debate today on a subject that affects thousands of fellow Scots and almost a quarter of a million 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 Macavidi and Bede must be revisited. A paper written by these two psychiatrists in 1970 has influenced medical, public and media perceptions of ME as anonist for decades. For ME Awareness Week, Press Officer Sarah Staples argues that it is a story that every patient with ME needs to know and share. In fact, it was claimed that it would almost be funny if its effects had not been so tragic. A disease defined by a flawed 40-year-old study where no patients were interviewed and which concluded that ME was mass hysteria because many of those affected were women. They even suggested that the disorder be called myalgia nervosa, which is quite unbelievable when you start to realise the suffering that those people endure. Ask anyone, male or female, who has it and they will tell you their own horror story of the day a doctor told them to go home, take an aspirin and rest, or the time a taxi driver took someone to college joked, while it was only a short walk and it was inferred that they were lazy. One sufferer in Falkirk described how in some days she could only get downstairs by bumping down on her behind and crawling back up on her hands and knees. Others cannot even get out of bed. Another sufferer in my own region described it as getting up after night in the tiles with a bad hangover. ME is also referred to as chronic fatigue syndrome, which affects around 250,000 people, children as well as adults here in the UK, and around 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 around 400 people in my region alone who are suffering but are not necessarily diagnosed as having ME. Many people with ME, or CFS, experience long delays, sometimes over a year in obtaining a formal diagnosis. As a result, they often are given inadequate or even inappropriate or harmful advice on management. That is because medical education on both the diagnosis and the management of ME at both 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 inpatient facilities are almost non-existent. Deputy Presiding Officer, I, like my other colleagues here today, have tried to illustrate how ME can have a huge and life-changing impact on sufferers, and 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 needs to be done to assist those suffering and so much more vital research is needed to understand this illness and we must look worldwide at the whole issue surrounding ME. I thank Gail Ross for bringing this vitally important issue forward for members' debate and I hope that the debate-debate today and all the events that are scheduled around the ME awareness week do much to raise issues that ME sufferers endure on a daily basis. Thank you very much. I now call on Aileen Campbell to close with the Government. Ministers and sub-ministers are there about please. I am pleased to have the opportunity to close today's debate marking ME awareness day 2017, which is on Friday and indeed ME awareness week. I thank Gail Ross for bringing in this issue of ME to the chamber this afternoon and a sour for the valuable context of why the date was chosen putting its link to Florence Nightingale. It has been clear from listening to the contributions from members that ME remains a condition that many people do not understand or appreciate the impact it can have on the lives of those who live with the condition. In Gail Ross's opening remarks, she articulated very clearly the severe and significant health implications for those suffering from ME, the physical deterioration and in the case of Emma Shorter, who is physically unable to leave the house and also articulating the mental health issues that this can cause as well and the need to recognise the wellbeing needs in treating mental health issues. Gail's friend Sally's story is also an illustration of how the condition presents herself and the long unfortunate journey that Sally had to embark upon until diagnosis and the escalation of her condition and the physical, mental and financial toll that this has taken on her until she is finally able to be on a path to help her to hopefully get better. All members and their contributions are important in order that together we can raise awareness of ME and the issues that the condition causes and as a Government we believe that everyone living with ME should have access to the care and support that they need and that should be aided and helped by our 2.5 million recurring investment into specialist nursing. I concede and accept that there are issues and more that we need to do however this should help bring about improvements and of course there's more that we need to do and recognise that support is needed for families and carers of those with ME. To this end and I think again it was an issue made raised by Anna Sarwar, the third sector partners also play a crucial role and that role should be recognised. They act as a powerful advocate for people with ME and they also deliver high quality services and support to people with the condition. The Scottish Government has also got a good relationship with Action for ME, the UK's leading third sector organisation in ME and over the past year we've been working very closely with Action for ME and I'm pleased to say that we've recently been able to provide funding to the organisation and to support their In For Me Scotland project. This project 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 available to people with ME. Gail Ross and Emma Harper spoke about the real need to see our medical and social care staff have a greater understanding, empathy and knowledge of ME and I do hope that Gail's friend Sally takes some comfort that her words can help influence how medical professionals respond to the condition and that's why that funding that we have provided to Action for ME to help support a project aiming to improve healthcare pathways and health outcomes for people with ME is so important. The project will also aim to promote education and the condition amongst healthcare professionals, including three round-table discussions, production and dissemination of professional reasons and deliver specialist webinars and seek to bring about positive change in the health and social care support that is available. Again, I'm happy to continue to keep Gail Ross updated on how that work progresses. Action for ME is also about to undertake a five-year peer mentoring project made possible with substantial grant funding of over £300,000 from the Scottish Government's Transforming Self-Management Fund. That aims to build confidence and reduce isolation of people affected by ME and just as importantly for their carers as well. This project will develop a peer mentoring self-management support network across the country. Government support for both of those projects should be seen as a sign of our commitment to improving healthcare outcomes and quality of life for people who live with ME in Scotland. At a national level, our national advisory committee for neurologic conditions is looking at models of care that represent the improvements that we want to see, 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 also recently met officials from the national advisory committee and are currently exploring how they can work collaboratively going forward as well. Research was also raised as a particularly pertinent issue in relation to ME. Again, I reiterate and recognise the work of third sector organisations, including Action for ME, in raising the research profile of the disease. Officials from the chief scientist's office would be happy to meet with the charity to discuss areas of mutual interest. Applications looking at the underlying causes, diagnosis and treatment of ME are welcomed and, in common with all other applications, those would go through the CSO standard independent peer review process, and I hope that offer from the CSO will be taken up. Gail Ross also, in her opening remarks, articulated the often heartbreaking interaction that ME sufferers have with the DWP. That is why I am proud of the commitment that this Government has made to build a fairer system by designing an assessment process that prioritises the needs of the person and not the needs of those delivering the assessment. For those with long-term conditions, such as ME, we will introduce long-term awards and wherever possible assessments for them will be paper-based rather than face-to-face, and we will stop that revolving door of assessments that have caused so much stress and anxiety and certainly do not do any good to people suffering from conditions that are exacerbated by such stress and anxiety. That is in stark contrast to the experiences that people do recount in relation to the DWP, and that is why we will continue to develop a system that puts the quality and respect at the heart of our approach. Finally, to close, I thank members for their thoughtful and 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 will keep looking at how we can do better, how we should transform and improve care, how we can equip ourselves to deliver even better health and social care services in the future for those who live with ME and, indeed, any other long-term condition. We have a hugely committed and professional workforce in our national health service, and with the continued support and hard work of everybody involved, I am confident that we can continue to improve care and provide better support for people living with ME, and hopefully make sure that the condition is no longer silenced. However, as it is at Parliament and together working across our party political boundaries, we can make sure that we can see very loudly that this is something that we are committed to making improvements for. I thank again Gail Ross and other members for their very informed, insightful and illuminating discussion and debate this afternoon. Thank you. Thank you. That concludes the debate. I suspend this meeting until 2.30.