 Mae'n effrazio. Maen nhw'n i ni'n gael ar yr ardalaison, fod yn gallu sgwllte dresser, gyda'n gael i'r gael a'r f luxurious. Cymru mae'lla yn ddod ymdodol i'i gofio. Felly, mae'r ffrazio yn ddod i'r gael a'r ffaiciaid agor. beth yw dyn yOrdofiannau i Merdech chi i fynd i chi i'w Mc enforthiau. Foddan eohonyn i'i ddweithio yig disadvantage nogwiant, sy'n dod y gallwch byddaeth ffrifadau? Mae ceis seldiw meddwl yn fyrniant i fynd i'w teimlo chi i fynd i ymddangos iwn eu bod iechydig unaud hynny oاسbeth fretw. Rwy'n sig recording yn diddy ëPri procent of the t Character Cabinet nozzleí, my Resid знаach eich rank supervisor micro ble mwy geisig am ei anrhyfo'r yn caelци. Fy yd I ddatgr Volssun yn unig hynny o ei codi yn y cywio ar de Sans I, Byddwn i ddifu ddim yn iawn i gyda'w cwestiynau am y gyfnodau FME-Action Scotland i ddoch yn y gallu'r gaeli, I hope that they have managed to make it in. To hear what might be done to improve care for those in the grip of this debilitating condition. For FME sufferers, even making the trip here could worsen their symptoms because the condition impairs the ability of cells to produce energy and increases post-exertional malaise. The worsening of symptoms following any activity Felly, rydw i, fel y gallwn i, rydw i'n ddod i'n gweithio i'r cwmwynt. Over two decades ago, the Scottish Parliament's CPG on ME was formed, and in 2017, the first millions missing event took place outside the Parliament, and former MSP Gail Ross held a member's business debate. In September 2022, ME action Scotland met Cabinet Secretary Humza Yousaf, and he said that progress needs to be made, and he doesn't want to, and I'll quote, speak to us again in six months and not have moved forward. Sadly, we are now approaching the six months on, and from that meeting, and little or no progress has been made. ME is becoming Scotland's forgotten illness, and having met the team from ME action Scotland and listened to the sheer determination and passion as they continue to fight for targeted funding towards ME treatment by the NHS, I knew I had to help in any way that I can. A constituent of mine, Joel Busel Bruce, was an energetic, fit and ambitious 28-year-old manager in financial services with her whole life ahead of her. Joel is now 49 and has an ME for 21 years. Joel sent me her story, and I would like to read some of that out. Like so many, I've struggled with medical appointments over years. I understand that our doctors are overworked, underfunded and haven't been trained properly on ME, but they must take the responsibility for the toxic culture around ME, long Covid and fibroid myalgia. At the chronic pain clinic in Leith, I was recommended graded exercise therapy by a doctor who wouldn't acknowledge my ME diagnosis. I explained that this therapy was about to be banned under the new NICE guidance. Before that, a doctor joked, within earshot, about my feeling the need to advise him of my mental health condition. Before that, a neurologist tried to downplay my diagnosis to burn out. Before that, it was another GP saying, we call it CFS now, that's the grown-up name. If you ask people with ME if they recognise themselves in my anecdotes, I guarantee that they will say yes, not 20 per cent or 50 per cent, all of them, and you will be flooded with far worse stories in mind. We face systemic bias within the medical community that needs education and consequences. My GP isn't uncaring, but we live in a time of evidence-based medicine. The royal colleges have refused to acknowledge that science has moved on and protect psychiatry's hold on research funding. Unfortunately, for people like me, they simply have more resources and status in society to keep pumping out false narratives about our disease. I had to become more knowledgeable about my illness than most doctors, and they don't hide their resentment about it. If you're in doubt, read the Reddit threads about ME or fibromyalgia, and you will see what they say of us and our diseases. They call us malingerers, delusional, heart-sync, drug-seekers. Would you trust your loved ones in those hands? That's quite a shocking statement that we've received, and it's a heartbreaking story, but what makes it worse is that it is very common for sufferers of ME. Another constituent of mine, Bridget O'Dogartie—hopefully I've got your name, spell—got in touch with me and asked me to share her story to highlight this important opportunity for MSPs to stand alongside people with ME and call on the Scottish Government to implement the recommendations of the stakeholder report that they commissioned earlier this year. She said, I am one of more than 21,000 people in Scotland living with ME, and one of the far too rapidly growing number of people who developed ME because of long Covid. I was too sick to work for 13 months and lost a significant amount of income in that time. I have been left so ill that I can only work half-time from home, which has significantly altered my working role and I have no guarantee that my employer will facilitate me continuing to work remotely in the long term. I am too ill to socialise with friends, to travel, to visit family or to do most of the activities that I love. Up until Covid in ME, I regularly did fieldwork in remote areas of the world as part of my job as a geologist and I was an ultramarithan runner. Now I can only walk for 20 minutes before having to stop, rest and go home. I don't think that anyone would want my poor quality of life. It is unrelenting, hard to live like this and there is no medical or social support. In November 2020, I was referred to the NHS ME CFS clinic in Edinburgh. The specialist physiotherapists and psychologists at the Edinburgh clinic were supportive and offered me all the help that they could, but they had nothing to offer to help me get better, only to stop me getting worse. Disappointingly, there has been little progress in Scotland with how ME is diagnosed and managed, despite best practice guidance being available on how to support and treat patients, including the dangers of graded exercise, encouraging people to push through the symptoms. I am here, as I said earlier, because I want to make sure that the voices of sufferers are heard and that we amplify the support for ME action Scotland's campaign. I hope that members take part in my debate this afternoon. We will all help to raise awareness among other MSPs and the wider population, and I am delighted to see so many people in the chamber after FMQs. Thank you very much. Thank you, Ms Webber. I now call Emma Roddick, who is joining us remotely, to be followed by Donald Cameron. Up to four minutes, please, Ms Roddick. Thank you, Presiding Officer. I am grateful to Sue Webber for bringing this debate forward. I am glad to have the opportunity to contribute to it. I have spoken before in the chamber about how being disabled often means that you have to become an advocate for yourself and usually for others with the same condition as well. You become an activist because you have to, to get treatment, to get adjustments at work to be listened to. I have been overwhelmed with the number of people who got in touch with me to share their stories and information and make sure that I took part in this debate today, which I am very happy to do on their behalf. Having also met with ME action last year to discuss their concerns, I have been struck by how consistent and clear the asks from sufferers have been. There is no ambiguity here, no merguiness. Folk want their doctors to understand what their condition means. They want those treating ME patients to know what may make the condition worse instead of better, so that they do not cause further harm. They want clear guidelines so that doctors are armed with the information and confidence that they need to prescribe treatment and support, so that patients can refer easily to guidance that they can trust, rather than feel the need to undertake mass individual research to figure out what their condition means for them and what treatment they need. I do not think that that is an unreasonable expectation or an unreachable goal. Chronic conditions vary so widely, and I know that while certain types of physio and exercise might help me, it could cause long-term, potentially irreversible damage to someone with ME. I have met a lot of people now who have had that damage done to them or a loved one because someone involved in their care did not have the knowledge that they needed. One constituent, Morag, shared a very emotional account with me and, like others, wanted me to use her story in today's debate. I am grateful to her for taking the time to share her story for what I am sure was not the first or probably the last time after she was unable to meet me last year due to her condition. She first told me something very familiar, which is that she knows that her GP is busy, so she speaks to them when something becomes acute and she needs help firefighting. That is really common amongst disabled people. There is no check-in for an overview of all the many symptoms that you struggle with every day, so you go to the doctor when something gets really, really bad. Over time, you end up managing more and more serious symptoms without medical intervention and accept, as normal, things that would have been terrifying earlier on in your diagnosis. As my constituent has a chronic condition, a more managed approach that allows her to discuss all the things that she is barely managing day in, day out, could really improve her life and give her the space to raise and receive help with slightly less scary and less immediate symptoms, but that needs a specialist service. A few constituents have mentioned comments by Jason Leitch to me saying that nice guidelines should be used while there is no Scottish guideline for ME, but my constituent does not have a care and support plan. She does not have a consultant, specialist help or multidisciplinary input, so nice guidelines being met is just not the reality for ME sufferers who have been in touch with me, and they want a Scottish guideline. My constituent has described the added stress of coping alone and how that makes her condition worse. She is so limited by her condition without managed support, but who knows how much better or at least less difficult her life would be with specialist help. I have written to NHS Highland, Orkney, Shetland, Grampian, and Western Isles about individual cases, but when there is such a clear pattern, it is clearly national guidance and pressure that is needed. Thank you, Ms Roddick. I now call Donald Cameron to be followed by Jackie Bailey up to four minutes, please, Mr Cameron. Thank you, Deputy Presiding Officer. Can I congratulate my friend, Sue Webber, on bringing forward this important debate? ME affects some 20,000 people across Scotland. Those living with ME often have very different experiences of the condition, with symptoms severely fluctuating, therefore leading to the need for high-level specialist care. Symptoms include extreme pain, post-exertion malaise and cognitive dysfunction, and they all have a debilitating impact, not just on people's physical health, but also for their mental health, their careers, their education, their relationships, all of which can be severely affected by this condition. I want to use my short time today to share some of the experiences told to me by constituents who are living with ME, and many people have been in contact with ME since this motion went before the Parliament. They range in ages, life situations and symptoms, but they all agree that more must be done to support them and, crucially, support the people who support them, including their families. Sarah, from the Isle of Ling, was a senior physiotherapist for 25 years, and she enjoyed mountaineering and long-distance walking. However, as a result of ME, she now struggles to walk more than a few metres. She requires an electric chair for any further distance and is mostly sofa and bed bound. She wrote movingly to me, saying that she felt lucky to have had such a fulfilling life prior to her ME diagnosis, but she worries for young people whose lives are left abruptly without these active experiences and memories, and I agree. She has a good local GP and she has been able to provide, yes, of course. Clare Adamson, for his contribution and for the other contributions today. I think perhaps that we ought to also remember that there are young people with ME, and they are quite often missing out on educational opportunities and opportunities to take part in the activities that I have just been talking about. Does he agree with me that there needs to be a consistent approach to supporting young people with ME in our schools? Donna Cameron. I am very glad that the member made an intervention, and I am very glad that she made that point. I completely agree that there needs to be a consistent approach. I will come on to someone in a moment about a young person. There is a young six who had ME, and I think that we must remember them in this discussion. There are many people living in rural communities who struggle to access help from the NHS, and more has to be done to widen access. Sarah, who I was talking about, said that ME is just not taken with the seriousness that is needed and the need to recognise the physical impact, has another constituent who wishes to remain anonymous, told me that his experience of ME was one of feeling abandoned, stigmatised. He felt that throughout the onset of his symptoms through the diagnosis having to settle into this new life, he was left to figure out everything for himself. He said that, without counselling and the help that he receives from voluntary organisations such as the Dockers Centre in Loch Gillwed, he would find it difficult to make the best of his life. Another constituent who cares for our son contacted me, she told me that he has not seen a GP for two and a half years, and when he does need to see a GP, it is often the struggle to find one who recognises ME as a physical condition, as well as a physiological one. All of those stories have a common theme, and I wish that I could have time to recount more of them. ME is a legitimate and debilitating condition that is still not fully understood. There is often a lack of access to NHS services and treatment, and often this is provided by the voluntary sector and by relatives instead. Thirdly, those living with ME want to see much more investment in finding a cure, so they can go back to living the lives that they used to lead. This debate has to be the start of a change. We need change in action from the Scottish Government, and it is vital that those living with ME are at the forefront of any developments. Can I finish with a story of hope? This is about someone whose daughter had ME between the ages of six—a six-year-old—and 19 years. That is a reminder that ME can afflict people from a very early age, but with treatment, she recovered and aged 32 and is healthy and has full-time work and is living independently. We need more of those stories, and it is time for the Scottish Government to take action. I welcome the review, but it is important that this is not the end of the story, but rather the start of real change. ME actions Scotland has been fighting for proper funding and research on the condition for many, many years now. The missing millions rally that took place in front of this very Parliament last year was a challenge to policy makers and those delivering services. We heard testimony from people who suffer with ME and chronic fatigue syndrome. They spoke about how they often feel ignored and unseen by healthcare professionals that simply do not know how to treat them because of a lack of information and understanding. I have been contacted, as others have, by many individuals and families about the lack of services, and I thank them for their powerful testimony. They tell me that their quality of life is depleted, with many unable to work and that stress over paying the bills consumes what little energy that they do have. The story of ME, a 16-year-old with ME, is absolutely concerning. Her family told me that the support has been shocking. Initially, nobody advised her to rest. She tried to push on and got much worse. Her paediatrician was unable to help her. Eventually, the paediatrician confessed that she knew little about the illness. There are currently no specialist consultants for ME in Scotland and only one specialist nurse, despite figures showing that a typical GP practice of 10,000 patients will have around 20 to 40 people with ME. In a recent survey of practising GPs, 70 per cent thought that ME was rare, 30 per cent thought that it was psychological and not physical. In the last 10 years, the Scottish Government has funded only two pieces of research into ME. 45,000 was given to fund half of a PhD project, which only amounts to less than £1 per person. It is clearly inadequate for a condition that affects so many people. The Scottish economy loses out, too, because the estimated cost of ME to the economy is £360 million per annum, or £17,000, for each person with ME each year. ME does not just cause a loss of workforce due to exhaustion and other symptoms, but it has a knock-on effect for families of people who require care at home. 81 per cent of carers are husbands, wives or partners, 16 per cent are parents or children. Many of those carers must reduce the hours that they work or give up their jobs completely to provide the care of loved ones' needs. Those issues are not exclusive to people with ME and CFS. People with long Covid report many of the same symptoms as those with ME. Testimonies have shown similar treatment by healthcare professionals when seeking diagnosis. Let us join that together, because the money that is granted to treat long Covid does not go far enough, either. It amounts to just £16 per person. I welcome the Covid-19 committee's inquiry on long Covid. I believe that this is an opportunity to get the way that we treat that condition, but that it will have knock-on effects, because long Covid and ME should not actually be treated as two separate entities. We can learn from both and put the solutions in place for both, because those conditions are debilitating. They affect hundreds of thousands of people and they should be treated with the same severity as any other medical condition. They have waited a long time. The Scottish Government should implement the recommendations from the review without delay, dedicate proper funding to ME, CFS and long Covid as a matter of urgency, because, for too long, people with these conditions have been ignored and let down. It is time that they receive the recognition that they so rightly deserve. Thank you, Ms Bailey. I now call Beatrice Wishart, who is joining us remotely, to be followed by Gillian Mackay. Up to four minutes, please, Ms Wishart. Thank you, Presiding Officer, and thank you to Sue Webber for bringing this important debate to the chamber this afternoon. I would also like to thank ME Action and Action for ME, who provided briefings before the debate. I welcome Sue Webber's motion and the recommendations of the review of the NICE guidelines, which are outlined in the motion. Consideration to be given to identifying the most effective approaches to approving GP knowledge, confidence and understanding of ME, CFS through an appropriate education programme, pilot services and a selection of NHS boards to test the development of specialist services with patient involvement, with third sector collaboration embedded in the design. The outcome of any rural or islands health board selected to be a part of a pilot scheme will be especially important to those in Shetland and other island areas for people living with ME, and I would ask that the Minister address whether an island health board will be considered for the pilot scheme. ME is a much misunderstood condition with symptoms that fluctuate from mild to very severe between individuals living with it. 20,000 people across Scotland are diagnosed with ME, not only a statistic, but each person, a family, a story. This review will not be worth the hard work that has already gone into it if it does not go some way to improving, empowering and assisting those 20,000 people's lives. Unlike other conditions, this is not one that is concentrated in one part of the population, it can be anyone who is diagnosed. I am sure that those of us speaking in this important debate today will know someone who has been affected by ME. Perhaps someone who has had this debilitating illness for decades, unable to function fully, having to take time off or even having to give up work, yet considered by some ill-informed views that they were malingering, as described earlier by others, when nothing in fact could be further from the truth. I hope for a society that better understands and is better informed about ME and how it treats those affected by it. It impacts mental health as well as physical health. I know of a young person who has lost many years to this illness. Often bedbound, they and their family have had to deal with much over the years. They've lost time as a teenager. That much important period of maturing from childhood into adulthood, years that cannot be replaced, lost education and socialisation, and it affects all the family. As the ME action briefing tells us, children as young as five are affected with peak onset of symptoms around 13 to 15 years old. We need to look at the services available to those young people as there's a lack of agreement on the diagnostic criteria for pediatric cases, meaning that there's little reliable data on the prevalence of ME among children and adolescents. The 2021 NICE guideline for ME advises that a child or young person with suspected ME should be referred to a pediatrician and then on to a pediatric ME specialist team, but this was flawed with ME action finding that pediatricians across Scotland are not suitably trained to diagnose and support young people with ME, nor do they have access to specialists for onward referral or for guidance and support. Healthcare professionals need the confidence to diagnose young people correctly. More research is needed into causes and treatments. Action for ME are working with the University of Edinburgh to investigate genetic causes of ME, and anyone aged over 16 with an ME diagnosis can sign up to take part in the study. In closing, I would like to reiterate the calls on the Scottish Government by action for ME. Develop a national strategy, ensure the new NICE guidance is implemented correctly across Scotland, and support all children with ME to have access to trained hospital pediatricians and community services. Thank you, Presiding Officer. Thank you, Ms Wizard. I now call Gillian Mackay to be followed by Christine Graham. Up to four minutes, please, Ms Mackay. Thank you, Deputy Presiding Officer. I, too, would like to thank Sue Webber for bringing forward this important debate and extend my thanks to all those with ME who have reached out to Scottish Green MSPs to share their stories. I understand that even writing an email can be enough to trigger a flare-up when your symptoms are severe, and I am grateful to all those who took the time to share their experiences. I would like to join other colleagues from across the chamber in welcoming the report of the Scottish stakeholder review of the NICE guidelines on ME. Myelagic encephalomyelitis, often referred to as ME for short, is a long-term condition affecting around 20,000 people in Scotland. ME is a complicated condition that can vary significantly in different people. It is so important that we accept and adopt some of the key changes in this publication. A central part of that is supporting changes within the NICE guidelines in ending the cynicism and disbelief experienced by those living with ME in regards to their condition. It is so important that we support those living with ME by acknowledging their condition and ensuring that others who may have the condition are believed and encouraged to come forward and seek medical support. ME is a condition, as we have already heard, with varying symptoms that are specific to every individual. Common symptoms include fatigue, sleep disturbances, issues with recovery from physical activities and cognitive issues around memory or concentration. The severity and prevalence of those symptoms can vary widely from individual to individual. There is no specific test to diagnose ME, making diagnosis and treatment difficult for many. Again, I would like to underscore the importance of having a debate around this issue. Post-pandemic now is such a vital time to advance the discussion around ME in the public domain and I am pleased to see the Government's statement regarding the review and welcome their support for the NICE guidelines. I would like to draw a focus to the experience of some of my constituents in central Scotland. One theme that emerged from our constituents was the lack of belief from healthcare professionals and their ability to advocate for their own healthcare. Even though the new NICE guidelines on ME, which were published almost two years ago, advised against the use of treatments such as graded exercise therapy, some patients with ME are still being recommended by doctors in Scotland. One woman described how, during her first appointment in June 2022, the doctor said that he knew that graded exercise therapy got a bad rap, but it could be effective for some people. When she replied that she would never engage with graded exercise therapy, as her daughter's ME had become severe due to the constant pressure to do more and push herself beyond her energy limits, the doctor justifies his advice with what the patient believed was further misinformation about deconditioning. That is just one example from many stories of patients feeling they have little choice but either to accept advice, even if it goes against research produced by charities who have campaigned around ME or being labelled as refusing to engage with their care. When people with ME need to become their own best advocate, they become less trusting of our healthcare system to acknowledge and address their medical needs. We still have a long way to go in understanding how patients can manage their ME long term and avoid those issues from continuing to appear. I would be appreciative if the minister could outline any actions taken or due to be taken around the report's recommendations that pilot services be funded in various health boards to develop specialist services. I am pleased to see that patient involvement will be an important part of this work. I fully support that and the third sector collaboration that is to be embedded in the design. In closing, I would like to thank ME Action Scotland for all the work that they are doing to support individuals with ME. Their advocacy and policy work has done so much to bring greater prominence to the debate and the betterment of individuals living with this condition. However, we should be clear that ME is not a rare condition. The prevalence is four in 1,000 people in Scotland. It is vital now that we begin to acknowledge that this condition has a prevalence across the population and build in support measures for people to come forward and gain the diagnosis and support that they need. I would advise that, due to the number of members who wish to speak in this debate, I am minded to accept a motion without notice under rule 8.14.3 to extend the debate by up to 30 minutes. I now invite Sue Webber to move a motion without notice. Moved, Presiding Officer. Thank you, Ms Webber. The question is that the debate be extended by up to 30 minutes. Are we all agreed? We are agreed. I now call Christine Grahame to be followed by Finlay Carson up to four minutes, please, Ms Grahame. Thank you, Presiding Officer. I thank you to Ms Webber by surprise, but she coped well. I congratulate the member on securing this debate. I go so far back as the days when ME was labelled yuppie disease, with the inference that it was a middle-class condition at best psychosomatic and worse just plain privileged self-indulgence. Thank goodness that it's moved on, if only not enough, and is recognised by more people as a neurological condition. It's certainly recognised as a neurological condition by NHS Firm, and I quote from it. ME or chronic fatigue syndrome is a long term chronic neurological condition that affects the nervous and immune systems. People with ME, CFS, experience severe pain and fatigue when the body is not able to recover after using even small amounts of energy. It feels very different from ordinary tiredness. It might take a day or two to kick in after physical, mental or even emotional exertion. It doesn't go away with sleep or rest and affects everyday life. The symptoms vary from person to person. Sometimes you'll be able to do some normal everyday activities. At other times, symptoms may get worse affecting your daily life. Some physical or mental activities or combinations of activities can leave people with ME, CFS feeling completely exhausted. It can also lead to increase in other symptoms. Here's the issue, however. There's no, that's not the quote, continuing quote, there's no single test to detect ME, CFS. A diagnosis is made after other possible known causes for symptoms have been excluded. I support the comments that long-term Covid may have opened up more minds to this. I close the quote. Because it's got this varying impact, this adds to the complexities and diagnosis and treatment if suitable and indeed support both physical and emotional. I too, like colleagues, will give two examples. I recall a colleague many years ago who suffered from ME when little was known about it, and by way of explanation to me of how it impacted, he told me how one day he could just shave normally, but as if his internal electric circuitry had rebelled, the next day could barely move. The dramatic changes from day one day to the next, the condition can bring, can mean people sometimes accuse others wrongly of faking it, or as whoever said, just malingering. Deputy Presiding Officer, I also have the consent of a constituent to relay the experience of her and her son, and I quote. I'm happy for you to use my story if it's anonymous, as in constituent, or first name only please. This is more for my son's privacy than my own. Here is our story in short. When my son was 14, his life changed dramatically. He had been academically gifted, sporty and generally a social and happy boy who enjoyed life. He came down with a bug that he never recovered from and was later diagnosed with CFSME. For two years he was housebound, unable to go further than our back garden to unwell to attend school and isolated from friends. My son was offered no treatment and support was almost non-existent. I gave up my job to look after him. Everything was a struggle as his condition is hugely misunderstood. CFSME is much more than debilitating fatigue. He also suffers muscle aches, stomach pain headaches, cognitive fog, which makes learning very difficult, sleep disturbance and the fatigue effect, everything he does. I spend my time caring for him and researching possible treatment or supplements that could help his recovery even a little. We are now four years in and we have no support apart from a private specialist that we fund ourselves. We have spent thousands over the past few years in private consultations, supplements and medications to help his condition. Recovery is slow and costly, isolating and lonely, close quotes. I note minister the complexities of the condition, but I look forward to hearing the minister's response in relation to the contributions from all members. I thank the member for bringing this important debate to the chamber. We debated it a few times, but it is something that needs to be kept on the alert. I congratulate my colleague Sue Webber for bringing this member's debate to the chamber today. As we have already heard, my algic in cephalitis—I am not even going to pronounce it, you all know what we are talking about—chronic fatigue syndrome is a complex chronic medical condition that affects around a quarter of a million people in the UK. In terms of Scotland, around 20,000 are living with the condition. The Scottish Government commissioned a report that seeks to improve medical education and raise awareness of this devastating neurological condition. However, it is really important that clear and fit for purpose treatment and support pathways are in place to ensure that everything is done to provide the most appropriate support for everyone that presents with ME symptoms. I agree with other members, including Jackie Baillie, that there is just not enough being done at the moment. ME shares symptoms that are very similar and have the same impact as an estimate of 192,000 people with long Covid. It is understood that the majority of people with ME or CFS the trigger was also a viral infection that has led to long-term disability. Among the report's recommendation is that pilot services should be funded in a selection of NHS boards to develop and test specialist services with patients involvement and the third sector collaborating absolutely embedded in the design. I hope that Dumfries and Galloway help board gets involved in such a move. The charity action for ME provides much-needed support for people of all ages, including healthcare services, as well as funding and carrying out research into the condition. Alongside providing targeted information support, healthcare services and advocacy to children, young people and adults with ME offers peer support services that reduce the isolation that so often comes with the condition, which brings me on to the notable work that is being carried out to my constituency of Dumfries and Galloway, the Dumfries and Galloway ME and Fibromyalgia network. I have met the group on a couple of occasions and there really are an inspiring bunch. It is heartbreaking to hear how the condition has completely taken over their lives, from the young to not so young, but once physically fit and active in both work and leisure terms, struggling on a daily basis with the stability symptoms. I remember a short period when I was in my early 20s when I was faced with very similar symptoms and thankfully it was a very short period, but I remember going out to move cattle and ended up lying in a gutter sobbing, because I remember the feeling of absolute despair at not being able to do anything and having no idea why and the frustration was overpowering. The board and the trustees of the Dumfries and Galloway ME and Fibromyalgia network is entirely made up of volunteers, each coming from their own varied life and work experience to bring invaluable help and running the network. The charity, led by its chair Eileen Longsworth, has approached almost 400 members, including a further 430 members, on its very informative Facebook page, allowing people living with the conditions to socialise with each other whenever they want and are able to and crucially swapping experiences and information. In the last year, it has been fortunate enough to secure £6,000 from the community mental health and wellbeing fund to start a range of projects locally, including free soup and sandwich facilities at its pop-up meetings. As the organisation moves forward, face-to-face meetings on a regular basis are beginning to start again. A Zoom facility will enable them to stage social meetings through a hybrid mix of virtual and actual attendance, and that will enable members to attend no matter what their situation is. We all know that, during the pandemic, Zoom was invaluable in cutting down the feeling of isolation for so many members across the region. The funding will allow the group to continue to allow those who are unable to attend in person the ability to participate in the craft workshops and implement wellbeing workshops with a range of topics from mindfulness, yoga to soap-making and calligraphy. The other outstanding work that is carried out by those charities is providing access to services available as well as valuable advice on where they can seek out support. I finished with the words from one member who said, I have been off sick for months and feel very isolated, unlike I'm missing out on life's fun bits. He is going to say, this really boosted my mood, self-esteem and I feel like going for a walk afterwards because I felt much better. You can see just the friendship, support and kindness that a network like that can bring goes a very long way to improving people's life. My thanks go to everyone, volunteers, including those living with these awful conditions, go on a daily basis, go that extra mile to help make life a little bit better. Thank you, Mr Carson. I now call Willie Rennie to be followed by Stephen Kerr up to four minutes, please, Mr Rennie. I want to congratulate Sue Webber for leading the debate, I think, so well, and to thank the Government, also, that's not something that I regularly do, but for commissioning the independent review. Now, a friend told me a story of an encounter just this week. He was out campaigning, he met a voter on the doors. The voter looked utterly drained, completely exhausted. He went through his usual spiel, but they stopped on mid-flow. She said that she was drained and she was exhausted and she just couldn't talk any longer. She couldn't stand for any longer. She couldn't even take a leaflet because she would not be able to concentrate for long enough to read it. Now, how anybody could resist a Lib Dem leaflet with a good bar chart on it is beyond me, but apparently that's one of the symptoms of this condition. But it does epitomise the all-consuming nature of the condition, largely invisible, but brings down healthy, active people. For too long, they've not been believed, while they are being believed now. We don't have to stand for the current level of services that are in place. We can match our belief in them with the level of service that they deserve. There is one nurse who is leading the way. Keith Anderson works at the Lady Bank Clinic in my constituency. He provides Scotland's only specialist nurse-led service for patients with ME-CFS. Keith devises individual management plans for patients, appropriate therapies based on energy conservation, activity management, relaxation techniques, sleep regulation, pain relief, lifting depression and anger and goal setting. He also uses some aspects of CBT in some cases. Those therapies may be given individually or in groups at home or in a specialist clinic. Keith has links with the social work department for the provision of useful equipment, respite care, home help, personal care and much more. He can refer patients to home and community education services and to disability advisers at university and at college. He also has contacts with the Department of Work and Pensions regarding benefits, welfare rights, job centres, occupational health and so much more, but, importantly, with paediatric and family support units, which has led to the development of a care pathway for children and young adults in Fife. Keith has praised highly and quite rightly so by all of his patients. I hear about him in all parts of Fife. It is a model of care that should not be restricted, however, to north-east Fife. It should be available everywhere across the country, but it shows, I have to say, what can be done. We need to know more, we need investment in biomedical research and clinical trials to be informed by the research priorities set out in 2022 by the James Lind Alliance priority setting partnership for ME. There is so much more we can do, but there are examples of care. There is good work that has been done. There is the great work that has been done in Dumfries and Galloway with the groups that Finlay Carson has talked about. Sue Webber is right. Funding is required. We need it to improve services. It needs to be guaranteed funding for the long term, and that funding should be available for people who have been left behind for far too long. I stand in this debate simply to give voice to constituents who have contacted me to describe their condition, because hearing their words in this chamber is very important. Their voices have to be heard. I would first like to refer to the story of David, who wrote to me to say that I am speaking up for my wife and daughter who both have ME. My daughter has suffered ME for more than four years. The illness has transformed her from a 13-year-old that was full of life, involved in youth theatre, dancing, signing, playing music instruments and participating in sports to someone confined to her bed 24-7, sensitive to light, heat and noise and debilitated by pain and brain fog. We have experienced the lack of understanding within the NHS due to previous nice guidelines, lack of GP and consulted knowledge of ME and related illnesses. Initially, my daughter was offered cognitive behavioural therapy and graded exercise therapy. Neither addressed her symptoms. It was only when she was able to participate in online consultations with specialists in England that we were able to make progress in diagnosis and have started to address some of the symptoms that have caused the decline in our health. Although she was unable to participate in education, she has also experienced the failure to provide suitable alternatives in in-person schooling. Despite the pandemic, the online offering for schooling for those who physically cannot attend school due to illness has still to be developed. I am grateful to David for sharing that story with us and I am privileged to share it with the chamber. I have also received this testament from Jules. Jules said, for over 10 years I was a therapist and devoted my life to helping others the best I could. When I first became ill, I kept going and put it down to general aches and pains. I finally had to give up what I loved with a final diagnosis of severe ME. I have been to psychology to be told that it is all in my head, pain management to be told to push through the pain and physiotherapy to me my muscles were so weak that there was nothing they could do. I have been on so many prescribed medications and vitamins. Last year I was taking in excess of 22 tablets a day and yet I would still crash. I am 90 per cent house and bed bound and my GP has exhausted all avenues for me. Therefore, as I was told, you must try and manage your illness as best you can. My husband works long shifts and I am home alone for at least 10 hours a day. Sometimes I have to crawl on my hands and knees to get to the bathroom and I go for days on end without being able to bathe or shower as I am just too exhausted to move. I feel like so many others that we are just left to rot. I feel like my mental health is now suffering as I become more and more isolated from society and there is no one to help me and many others just like me. I am severely fatigued to the point that I cannot stand upright otherwise I get so dizzy I am about to faint. I also have severe laboured breathing but there is nothing recommended but rest and resting does not cure ME. I do not wallow in self-pity. I spend what time I can online being an advocate for action for ME and whenever I can I offer support to other members of the social media groups I men and share my stories and experiences. I have a devoted and caring husband who does everything he physically can to look after me but it is tough when I am home alone for so long with no care. I try to do what I can to keep my spirits up but on days when I crash for no reason I cannot watch TV or read a book. I have to have my curtains drawn and be in a dark room. Sometimes I even need soft silicon earplugs to block out any noise as I get cognitive dysfunction too. This is not living, Stephen, this is just existing. The words of David and the words of Jules are a plea to the minister to act now on the independent report that she is now has in her hands. Thank you Mr Kerr and I now call on Marie Todd Minister to respond to the debate around seven minutes please minister. Thank you Presiding Officer. I'm very pleased to be able to respond to this important motion on behalf of the Government this afternoon and I do hope if I am able to speak quickly I'll be able to respond to all of the issues raised. I really welcome today's debate and I'm grateful to everyone who's contributed their time and energy to it and to the members of the public who join us in the chamber today. I'm particularly grateful for the testimonies that we've heard, the lived experience, which is absolutely, it's a powerful experience as a minister to stand here and hear the voices of the people of Scotland talking directly to government. It's very clear from those voices that we've heard this afternoon that many people with CFS ME have felt stigmatised or disbelieved by those who do not understand their condition. So the first thing I have to say is that I want this stigma and disbelief to end. We've made a visible commitment to supporting the recent changes to the ME CFS guidance and we continue to work to raise awareness of this condition and impact upon those living with it. It's also clear that there remains much to do in further co-ordinating the care of people with ME CFS and we are working hard to progress this. We want to get it right for people wherever they are in Scotland and I want to assure those living with ME CFS today that we are listening and we hear you. We know it's critical that we listen to our stakeholders about what changes would be most impactful. That's why we commissioned an independent stakeholder review of the nice ME CFS guideline last summer and in doing so we captured the input of the third sector, lived experience and clinical partners on how we drive forward now in implementing the guideline recommendations in Scotland. Because we absolutely recognise the importance of good quality care and indeed the right to education for young people living with ME and CFS, we specifically facilitated views from parents and carers in this exercise. With regard to national strategy, our neurological care and support framework is a five-year national strategy to improve care for those with neurological conditions, including ME CFS. Through this, we have spent over £2.1 million over the past two years in improving neurological care across Scotland. We have also continued to work with our UK Government counterparts to explore areas of shared interest on ME CFS and have contributed to the production of the UK action plan for ME CFS, which will be produced shortly. We are fully supportive of the nice guidelines on ME CFS in order to raise awareness, our national clinical director, to the step of writing to all health boards to highlight the guideline and key changes in practice regarding graded exercise therapy and cognitive behavioural therapy. I wrote similarly to the board of academic medicine who cascaded the information to Scottish medical schools. I am pleased to say that we have also partially updated the Scottish Good Practice statement on ME CFS to insert the key changes in practice from the nice guideline, and we will publish that on the Scottish Government's website this month. It is not a comprehensive rewrite, but rather a first step in creating a living document that is situated with us and can be further reviewed and updated with partners. I appreciate your intervention. Nearly 22 years ago, Meryn Ferguson, who is the wife of our greatly missed and previous Presiding Officer, Sir Alec Ferguson, wrote a book entitled What's Wrong with Me About Our Son Chris, and it looks at the problems with ME and the misunderstandings from way back in the 1930s. That book was written 22 years ago and little progress has been made. Can you tell us when you expect that fit for purpose care pathways will be in place and every health board in Scotland to ensure that we do not leave people behind and get the treatment that they need? I absolutely agree that progress has been slow. One of the blocks, as we have all articulated, is the level of stigma and disbelief that has been experienced by people with ME, and I absolutely believe that we are at a point where we are overcoming that particular hurdle. We are currently lazing with the Royal College of GPs in Scotland to ask them and to work with them on how to make progress around this condition and how to disseminate promotion of the guidance. We have heard a lot today about the desire for specialist ME-CFS services. ME-CFS can present a broad range of symptoms, and we know that there is no one-size-fits-all response. We want people to be able to access care in a setting that is appropriate and as close to home as possible. Our strengthening of Scotland's primary care workforce through the recruitment of multidisciplinary teams is making it easier for people to access that kind of care and support. We have now recruited more than 3,000 professionals, including community nurses, physiotherapists with increased funding of £170 million this year, to support the further development of multidisciplinary teams in primary care. By listening to what matters to people with ME-CFS and using the principles of realistic medicine to involve them in decisions about their care, we can deliver patient-centred support and reduce inappropriate care. I absolutely agree with members who have said that there may be lessons that we can learn in long-code Covid. That might be helpful for ME. Following our discussions with stakeholders, we recently surveyed all Scottish health boards to better understand their care pathways and provision for people who are living with ME-CFS. We plan to publish that data by May this year in a report that will review the board's implementation of the updated NICE guidance. It will highlight areas of good practice and it will identify where further supports needed to embed the guidance. That data will undoubtedly be helpful in identifying suitable places for pilots. We have heard calls today for increased medical education and training, and I absolutely understand the importance of supporting health and social care professionals in learning about the diagnosis and management of ME-CFS. That is why we funded the creation and dissemination of an online CPD course for all GPs and all health professionals in Scotland, produced by Action for ME and partners. By September last year, that module had been accessed 1,300 times, with evaluation data showing its significantly improved participants' ability to diagnose and manage ME-CFS. I am also pleased to report that NHS Education Scotland has created a practice-based learning module for primary care clinicians. I understand that NICE is currently reviewing third sector feedback on the module ahead of piloting it with GPs. We all recognise the importance of research for better understanding and the development of effective new approaches to the condition. Through the chief scientist office, we are putting into UK clinical research collaborations. That group is working to increase research capacity in the number and quality of ME-CFS research funding applications. I want to close by saying that we are going to continue listening to the human stories. I am sorry, I am in my closing part of my speech. I want to close by saying that we will continue to listen to the human stories that individual experiences behind the issues today. We will continue working to identify how to drive up standards of care in ME-CFS, how to better embed clinical guidelines, how to encourage research into its causes and potential treatments. I want to assure you that we will continue to work with those with lived experience, third sector and clinical partners to continue the improvement work that we have begun and to maximise the quality of life for people with ME-CFS right across Scotland.