Meeting of the Parliament

Meeting date: Thursday, February 2, 2023

Official Report 1172KB pdf

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ME Services

The Parliament is still sitting, so I ask the members of the public in the gallery who are leaving to do so quickly and quietly.

The next item of business is a members’ business debate on motion S6M-06112, in the name of Sue Webber, on a Scottish Government-commissioned review of ME services and future action. The debate will be concluded without any question being put, and I invite those members who wish to speak in the debate to press their request-to-speak buttons.

Motion moved,

That the Parliament notes that the Scottish Government commissioned and welcomed an independently-produced stakeholder review of the NICE guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), published on 5 July 2022; further notes that the review states that myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a complex chronic medical condition affecting an estimated 250,000 people in the UK and that around 20,000 people in Scotland are living with the condition, including in the Lothian region; highlights the four key symptoms characteristic of the condition, which are debilitating fatigue that is worsened by activity, post-exertional malaise (PEM)/symptom exacerbation, unrefreshing sleep and/or sleep disturbance, and cognitive dysfunction, and which affect multiple physiological systems and can fluctuate from mild to very severe in individuals and across the population affected; understands that the review recommends consideration be given to identifying the most effective approaches to improving GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme, and further understands that the review recommends that pilot services should be funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.

12:50  

I am pleased to bring this debate on ME to Parliament today, and I am delighted that members of #MEAction Scotland are able to join us in the public gallery—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 ME 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. So, as I said, I am delighted to welcome them to the chamber.

More than two decades ago, the Scottish Parliament cross-party group on ME was formed, and, in 2017, the first millions missing event took place outside the Parliament and former MSP Gail Ross held a members’ business debate. In September 2022, #MEAction Scotland met the Cabinet Secretary for Health and Social Care, Humza Yousaf, who said that progress needs to be made and that he did not want to speak to us again in six months and “not have moved forward”. Sadly, it is now almost six months since that meeting and little to no progress has been made.

ME is becoming Scotland’s forgotten illness. Having met the team from #MEAction Scotland and having seen their sheer determination and passion as they continue to fight for targeted funding towards ME treatment by the NHS, I knew that I had to help in any way I can.

A constituent of mine, Jo Bussell Bruce, was an energetic, fit, and ambitious 28-year old manager in financial services with her whole life ahead of her. Jo is now 49 and has had ME for 21 years. She sent me her story, and I would like to read some of it out. She wrote:

“Like so many I’ve struggled with medical appointments over the years. I understand our doctors are overworked, underfunded and haven’t been trained properly on ME, but they must take responsibility for the toxic culture around ME, Long Covid and Fibromyalgia.

At the chronic pain clinic in Leith, I was recommended graded exercise therapy (GET) by a doctor who wouldn’t acknowledge my ME diagnosis. I explained that GET was about to be banned under the new NICE Guidelines.

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 ‘burnout’.

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 they will say yes. Not 20% or 50%, all of them, and you’ll be flooded with far worse stories than mine. 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 protects 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.

So, 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 any doubt, read the Reddit threads about ME or Fibromyalgia and you’ll see what they say of us and our diseases. They call us ‘malingerers’, ‘delusional’, ‘heart-sink’, ‘drug seekers’. Would you trust your loved ones in those hands?”

That statement is shocking and the story is heartbreaking, but what makes it worse is that it is very common among sufferers of ME.

Another constituent, Brighid Ó Dochartaigh—I hope that I pronounced her name correctly—got in touch 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 the Government commissioned, which was produced last year. Brighid said:

“I am one of the 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’ve 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’m too ill to socialise with friends, to travel, to visit family, or do most of the activities I love. Up until Covid and ME I regularly did fieldwork in remote areas of the world as part of my job as a geologist, and I was an ultramarathon runner. Now I can only walk for 20 minutes before having to stop, rest, and go home. I don’t think anyone would want my poor quality of life. It is unrelentingly 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 physiotherapist and psychologist at the Edinburgh ... clinic were supportive and offered me all the help they could, but they had nothing to offer to help me get better—only to stop me getting ... worse.”

It is disappointing that 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 guidance on the dangers of graded exercise encouraging people to “push through” symptoms.

As I said, I am here to make sure that the voices of sufferers are heard and that we amplify support for #MEAction Scotland’s campaign. I hope that members who take part in my debate will all help to raise awareness among other MSPs and the wider population. I am delighted to see so many people in the chamber after First Minister’s question time.

I call Emma Roddick, who joins us remotely.

12:57  

I am grateful to Sue Webber for bringing the debate to the chamber, and I am glad to have the opportunity to contribute. 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, too. You become an activist, because you have to in order to get treatment, to get adjustments at work and to be listened to. I have been overwhelmed by the number of people who got in touch with me to share their stories and information and to make sure that I took part in the debate, which I am happy to do on their behalf.

Having also met #MEAction Scotland last year to discuss its concerns, I have been struck by how consistent and clear the asks from sufferers have been. There is no ambiguity and no murkiness—folk want their doctors to understand what their condition means; they want those who treat ME patients to know what may make the condition worse instead of better, so that they do not cause further harm; and they want clear guidelines so that doctors are armed with the information and confidence that they need to prescribe treatment and support, and so that patients can refer easily to guidance that they trust instead of feeling the need to undertake mass individual research to figure out what their condition means for them and what treatment they need. That is not an unreasonable expectation or an unreachable goal.

Chronic conditions vary widely. I know that, although certain types of physiotherapy and exercise might help me, they could cause long-term damage that is potentially irreversible to someone with ME. However, I have met a lot of people who have had such damage done to them or a loved one because someone who was 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, she 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 could not meet me last year because of her condition. She first told me something very familiar. She knows that her GP is busy, so she speaks to them when a symptom becomes acute and she needs help with firefighting. That is really common among disabled people; there is no check-in for an overview of all the many symptoms that they struggle with every day, so they go to the doctor when a symptom gets really bad. Over time, they end up managing more and more serious symptoms without medical intervention and accept, as normal, things that would have been terrifying earlier in their diagnosis. Because my constituent has a chronic condition, a more managed approach, which allows her to discuss all the things that she is barely managing day in and day out, could really improve her life and give her the space to raise, and receive help with, slightly less scary and immediate symptoms. However, that needs a specialist service.

A few constituents have mentioned comments by Jason Leitch, who said that, while there is no Scottish guideline for ME, NICE guidelines should be used. However, my constituent does not have a care and support plan or a consultant, so she does not have specialist help or multidisciplinary input. NICE guidelines being met is not the reality for ME sufferers who have been in touch with me, and they want a Scottish guideline. My constituent described the added stress of coping alone and how that makes her condition worse. Without managed support, she is so limited by her condition; who knows how much better—or, at least, less difficult—her life would be with specialist help?

I have written to the Highland, Orkney, Shetland, Grampian and Western Isles NHS boards about individual cases, but, when there is such a clear pattern, it shows that national guidance and pressure are needed.

13:01  

I congratulate my friend Sue Webber on securing this important debate.

ME affects some 20,000 people across Scotland, and those who live with ME often have very different experiences of the condition. Their symptoms fluctuate severely, which leads to the need for high-level specialist care. Symptoms include extreme pain, post-exertion malaise and cognitive dysfunction, which have a debilitating impact not just on people’s physical health, but on their mental health, careers, education and relationships—all of which can be severely affected by the condition.

I will use my short time today to share some of the experiences of which I have been told by constituents who are living with ME. Many people have been in contact with me since the motion went before Parliament. They range in ages, life situations and symptoms, but they all agree that more must be done to support them and, crucially, the people who support them, including their families.

Sarah, from the Isle of Luing, was a senior physiotherapist for 25 years and she enjoyed mountaineering and long-distance walking, but, 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 that she worries for young people whose lives are abruptly left without those active experiences and memories. I agree with her. She has a good local GP, who has been able to provide—

Will the member take an intervention?

Yes, of course.

I thank Donald Cameron for his contribution, and I am grateful for the other contributions today. Perhaps we also ought to remember that there are young people with ME, who are often missing out on educational opportunities and opportunities to take part in the activities that he has just been talking about. Does he agree that there needs to be a consistent approach to supporting young people with ME in our schools?

I thank Clare Adamson for her intervention, and I am very glad that she made that point. I completely agree that there needs to be a consistent approach and that we must remember young people in this discussion. In a moment, I will talk about a young person who had ME at the age of only six.

Many people who live in rural communities struggle to access help from the NHS, so more has to be done to widen access. My constituent Sarah, who I was talking about, says that ME is not taken with the necessary seriousness and that its physical impact is not sufficiently recognised.

Another constituent, who wishes to remain anonymous, told me that his experience of ME is one of feeling abandoned and stigmatised. He feels that, from the onset of his symptoms through to diagnosis and having to settle into that 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 Dochas Carers Centre in Lochgilphead, he would find it difficult to make the best of his life.

I was contacted by another constituent, who cares for her son. She told me that he has not seen a GP for two and a half years and that, when he does need to see a GP, it is often a struggle to find one who recognises ME as a physical condition as well as a physiological one.

All of those stories—I wish that I had time to recount more of them—have common themes: that ME is a legitimate and debilitating condition that is still not fully understood; that there is often a lack of access to NHS services and treatment, which is often provided by the voluntary sector and by relatives instead; and that those living with ME want to see much more investment in finding a cure so that they can go back to living the lives that they used to lead.

This debate must be the start of a change. We need change and action from the Scottish Government, and it is vital that people living with ME are at the forefront of any developments.

I will finish with a story of hope. It is about someone whose daughter had ME between the ages of six and 19, which is a reminder that ME can afflict people from a very early age. With treatment, she recovered and, at the age of 32, she is healthy, in full-time work and living independently. We need more of those stories, and it is time for the Scottish Government to take action.

13:06  

I thank Sue Webber for bringing to the chamber this debate on the Scottish Government-commissioned review of ME services. I welcome the review, although it is important that this is not the end of the story but, rather, the start of real change.

#MEAction Scotland has been fighting for proper funding for and research on the condition for many years. Its #MillionsMissing rally that took place in front of the Parliament last year was a challenge to policy makers and those who deliver services. We heard testimony from people who suffer from ME and chronic fatigue syndrome; they spoke about how they often feel ignored and unseen by healthcare professionals, who 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 being unable to work, and that stress about paying bills consumes what little energy they have.

The story of Amy, a 16-year-old with ME, is absolutely concerning. Her family told me that

“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 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 20 to 40 people with ME. In a recent survey of practising GPs, 70 per cent thought that ME is rare, and 30 per cent thought it is psychological and not physical. However, in the past 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 amounts only to less than £1 per person. That is clearly inadequate for a condition that affects so many people.

The Scottish economy loses out, too. The estimated cost of ME to the economy is £360 million per annum, or £17,000 each year for each person with ME. ME does not just cause a loss of workforce due to exhaustion and other symptoms; it also has a knock-on effect on the families of people who require care at home: 81 per cent of carers are husbands, wives or partners, and 16 per cent are parents or children. Many of those carers must reduce the hours that they work or give up their jobs completely in order to provide the care that a loved one 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, and testimonies have shown similar treatment by healthcare professionals when people are seeking diagnosis. Let us join things together, because the money that has been granted to treat long Covid does not go nearly far enough; it amounts to just £16 per person. I welcome the COVID-19 Recovery Committee’s inquiry into long Covid, which I believe is an opportunity to get right how we treat that condition. I also believe that the inquiry will have knock-on effects. Long Covid and ME should not be treated as two separate entities—we can learn from both and put the solutions in place for both.

The conditions are debilitating. They affects hundreds of thousands of people, and should be treated as having the same severity as any other medical condition.

People with ME/CFS have waited a long time. The Scottish Government should implement the recommendations from the review without delay and it should dedicate proper funding to ME/CFS and long Covid as a matter of urgency. For too long, people with the conditions have been ignored and let down. It is time that they received the recognition that they so rightly deserve.

I call Beatrice Wishart, who is joining us remotely.

13:10  

I thank Sue Webber for bringing this important debate to the chamber. I also thank #MEAction Scotland and Action for ME, which 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. They are:

“that ... consideration be given to identifying the most effective approaches to improving GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme”

and

“that pilot services should be funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design”.

The outcome for any rural or islands health board that is selected to be part of a pilot scheme will be especially important to people who are living with ME in Shetland and other island areas, so I ask the minister to address the question whether an islands health board will be considered for inclusion in the pilot scheme.

ME is a much-misunderstood condition, with symptoms that fluctuate from mild to very severe among individuals who live with it. Some 20,000 people across Scotland have been diagnosed with ME. That is not only a statistic—each of them represents a person, a family and a story. The review will not be worth the hard work that has already gone into it if it does not go some way towards improving, empowering and assisting those 20,000 people’s lives.

Unlike other conditions, ME is not concentrated in one part of the population: anyone can be diagnosed with it. I am sure that those of us who are speaking in this important debate know someone who has been affected by ME. Perhaps it is someone who has had the debilitating illness for decades, is unable to function fully, has had to take time off or even give up work, and yet is considered in some ill-informed views to be malingering—as has been described by other members—when nothing could be further from the truth. I hope for a society that better understands ME and is better informed about how it treats the people who are affected by it. ME impacts mental health as well as physical health.

I know of a young person who has lost many years to the illness. They are often bed bound, and they and their family have had to deal with much over the years. They have lost time as a teenager—that very important period of maturing from childhood into adulthood—and those years cannot be replaced. They have lost education and socialisation, and it affects all the family.

As the #MEAction briefing tells us, children as young as five are affected, and peak onset of symptoms is around 13 to 15 years of age. We need to look at the services that are available to those young people, because there is a lack of agreement about the diagnostic criteria for paediatric cases, which means that there is little reliable data on the prevalence of ME among children and adolescents.

The 2020 NICE guideline for ME advises that a child or young person with suspected ME should be referred to a paediatrician and then on to a paediatric ME specialist team. However, #MEAction has found that that process is flawed, that paediatricians across Scotland are not suitably trained to diagnose and support young people with ME, and that they do not 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 is working with the University of Edinburgh to investigate genetic causes of ME. 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: that it develop the national strategy, ensure that the new NICE guidance is implemented correctly across Scotland and support all children with ME to have access to trained hospital paediatricians and community services.

13:14  

I, too, thank Sue Webber for securing this important debate. I extend my thanks to all those with ME who have reached out to Scottish Green members of the Scottish Parliament to share their stories. I understand that when a person’s symptoms are severe, even writing an email can be enough to trigger a flare-up, so I am grateful to all those who have taken the time to share their experiences.

I join colleagues from across the chamber in welcoming the report of the Scottish stakeholder review of the NICE guideline on ME. Myalgic encephalomyelitis—often referred to as ME for short—is a long-term condition that affects around 20,000 people in Scotland. ME is a complicated condition that can vary significantly among different people, so it is extremely important that we accept and adopt some of the key changes suggested in the review. A central part of that is supporting changes in NICE guidelines and ending the cynicism and disbelief that people who live with ME experience in relation to their condition. It is important that we support those who are living with ME by acknowledging their condition, and that we ensure that others who might have the condition are believed and encouraged to come forward and seek medical support.

As we have heard, ME is a condition with varying symptoms that are specific to each individual. Common symptoms include fatigue, sleep disturbance, issues with recovery from physical activities and cognitive issues around memory and concentration. The severity and prevalence of symptoms can vary widely from individual to individual.

There is no specific test to diagnose ME, which makes diagnosis and treatment difficult for many people. Again, I underscore the importance of having a debate on the issue. Post pandemic, now is a vital time to advance the discussion around ME in the public domain. I am pleased to see the Government’s statement regarding the review, and I welcome its support for the NICE guideline.

I would like to focus on the experience of some of my constituents in Central Scotland. One theme that emerged from constituents is the lack of belief among healthcare professionals in patients’ ability to advocate for their own healthcare. Even though the new NICE guideline on ME, which was published almost two years ago, advised against use of treatments including graded exercise therapy, some patients with ME are still being recommended that treatment 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 that it could be effective for some people. When she replied that she would never engage in graded exercise therapy because her daughter’s ME had become severe due to constant pressure on her to do more and to push herself beyond her energy limits, the doctor justified his advice with what the patient believed was further misinformation about deconditioning. That is just one example from many stories of patients who feel that they have little choice but either to accept advice, even if it goes against the research that has been produced by charities that have campaigned on ME, or to be labelled as refusing to engage with their care.

When people with ME need to become their own best advocate, they become less trusting that our healthcare system will acknowledge and address their medical needs. We still have a long way to go in understanding how patients can manage ME long term and avoid issues continuing to appear. I would appreciate the minister outlining actions that have been taken, or are due to be taken, on the report’s recommendation that pilots be funded in various health boards to develop specialist services. I am pleased that patient involvement will be an important part of that work; I fully support that and the third sector collaboration that is to be embedded in the design.

I thank #MEAction Scotland for all the work that it is doing to support individuals with ME. Its advocacy and policy work have done much to give the debate greater prominence, and for the betterment of individuals who live with the condition.

However, we should be clear that ME is not a rare condition: its prevalence is four in 1,000 people in Scotland. It is vital that we begin to acknowledge that the condition is prevalent across the population and that we build in support measures for people to come forward and gain the diagnosis and support that they need.

Due to the number of members who wish to speak in the 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 invite Sue Webber to move the motion.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Sue Webber]

Motion agreed to.

13:19  

I think that that took Ms Webber by surprise, but she coped well.

I congratulate the member on securing the debate. I remember as 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, at worst, just plain, privileged self-indulgence. Thank goodness that we have moved on, albeit not enough, and that ME is recognised by more people as a neurological condition.

It is certainly recognised as a neurological condition on the NHS Inform website, which says:

“Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) 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.”

The condition

“feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or 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 an increase in other symptoms.”

However, the issue, is that

“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 Covid might have opened up more minds to the condition, whose varying impacts add to the complexities in diagnosis and around treatment—if suitable—and both physical and emotional support.

I, too, will give examples. I recall a colleague many years ago who suffered from ME when little was known about it. By way of explanation of how the condition impacted him, he told me how he could shave normally one day but could barely move the next, as if his internal electric circuitry had rebelled. The dramatic changes from one day to the next that the condition can bring means that people sometimes accuse others—wrongly—of faking it, or as Sue Webber said, of malingering.

I have the consent of a constituent to relay her experience and that of her son. She wrote:

“I’m happy for you to use my story if it’s anonymous, as in ‘a 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 CFS/ME. For two years, he was housebound and unable to go further than our back garden, too 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 this condition is hugely misunderstood. CFS/ME 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 affects 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’re now 4 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 on private consultations, supplements and medications to help his condition. Recovery is slow and costly, isolating and lonely.”

I note the complexities of the condition and I look forward to hearing the minister’s response to members’ contributions. I thank the member for bringing this important debate to the chamber. We have debated ME a few times, but we need to keep alert to the issue.

13:23  

First, I congratulate my colleague Sue Webber on bringing this member’s debate to the chamber today. As we have already heard, myalgic—I will not even try to pronounce it; we all know what I am talking about. Chronic fatigue syndrome is a complex medical condition that affects around a quarter of a million people in the United Kingdom, with around 20,000 people in Scotland living with the condition.

The Scottish Government commissioned a report that seeks to improve medical education and raise awareness of this devastating neurological condition. 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 who presents with ME symptoms. I agree with other members, including Jackie Baillie, that not enough is being done at the moment.

Symptoms of ME are similar to, and have the same impact as, long Covid, which affects an estimated 192,000 people in the UK. It is understood that, for the majority of people with ME or CFS, the trigger that led to long-term disability was also a viral infection.

The report recommends that

“Pilot services are funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.”

I hope that NHS Dumfries and Galloway 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, it offers peer support services that reduce the isolation that often comes with the condition.

That brings me to the notable work that is being carried out in my constituency by the Dumfries and Galloway ME and Fibromyalgia Network. I have met the group on a couple of occasions and they are an inspiring bunch. It is heartbreaking to hear how the condition has completely taken over their lives and how young and not so young people who were once physically fit and active in work and leisure struggle daily with debilitating symptoms.

I remember a period in my early 20s when I faced similar symptoms. Thankfully, it was short lived. However, I remember going out to move cattle and ending up lying in the gutter sobbing because of the feeling of absolute despair at not being able to do anything and having no idea why. The frustration was overpowering.

The board of trustees of the DGMEFM Network is entirely made up of volunteers. Each comes with varied life and work experience and provides invaluable help in running the network. The charity, led by its chair, Eileen Longworth, has approaching 400 members and a further 430 members on its informative Facebook page, which allows people living with the condition to socialise with each other whenever they want to and are able to. Crucially, it also allows them to swap experiences and information.

In the past year, the network 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, regular face-to-face meetings are beginning to start again. A Zoom facility will enable it to stage hybrid social meetings, where attendance can be virtual or in person. That will enable network members to attend no matter their situation. During the pandemic, Zoom was invaluable in cutting down the feeling of isolation for many network members across the region. The funding will allow the group to continue to allow those who are unable to attend in person to participate in craft workshops and to implement wellbeing workshops with a range of topics from mindfulness and yoga to soap making and calligraphy. Other outstanding work carried out by the network includes providing access to available services and valuable advice on where people can seek out support.

I will finish with the words from one member of the group:

“I have been off sick for months and feel very isolated and like I’m missing out on the fun bits of life.”

The network

“really boosted my mood, self-esteem and I felt like going for a walk afterwards because I felt much better.”

As members can see, the friendship, support and kindness that such a network can bring goes a long way to improving people’s lives. My thanks go to everyone—all the volunteers, including those who live with those awful conditions—who goes the extra mile every day to help make people’s lives a little bit better.

13:28  

I congratulate Sue Webber on leading the debate so well and thank the Government—that is not something that I regularly do—for commissioning the independent review.

A friend told me the story of an encounter this week. He was out campaigning and met a voter on the doors. The voter looked completely drained and utterly exhausted. He went through his usual spiel, but she stopped him mid-flow. She said that she was drained and exhausted, and that she could no longer talk or stand. She could not even take a leaflet because she would not be able to concentrate for long enough to read it. How anybody could resist a Liberal Democrat leaflet with a good bar chart on it is beyond me. However, the inability to concentrate is apparently one of the symptoms of the condition.

That epitomises the all-consuming nature of the condition: it is largely invisible, but it brings down healthy, active people. For too long, they have not been believed, but they are being believed now. We do not have to stand for the current level of services that are in place; we can match our belief in those people with the level of service that they deserve.

One nurse is leading the way. Keith Anderson, who works at the Ladybank clinic in my constituency, provides Scotland’s only specialist nurse-led service for patients with ME/CFS. Keith devises individual management plans for patients, with appropriate therapies that are 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 cognitive behavioural therapy 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 college.

Keith also has contacts with the Department for Work and Pensions regarding benefits, welfare rights, jobcentres, occupational health and so much more, including, importantly, with paediatric and family support units, which has led to the development of a care pathway for children and young adults in Fife. He is—quite rightly—praised highly by all his patients; I hear about him in all parts of Fife. That model of care should not, however, be restricted to North East Fife—it should be available everywhere across the country. Nevertheless, it shows what can be done.

We need to know more, we need investment in biomedical research and clinical trials, and we need to be informed by the research priorities that were set out by the James Lind Alliance priority setting partnership for ME in 2022.

We can do so much more, but there are examples of care. Good work has been done. For example, great work is being done in Dumfries and Galloway by the group that Finlay Carson mentioned. Sue Webber is right that funding is required—we need it to improve services, and it needs to be guaranteed for the long term. That funding should be available for people who have been left behind for far too long.

13:32  

I speak in this debate simply to give voice to constituents who have contacted me to describe their condition, because I think that hearing their words in the chamber is very important. Their voices have to be heard.

First, I refer to the story of David, who wrote to me to say:

“I am speaking up for my wife and daughter who both have ME. My daughter has suffered with ME for more than 4 years. This illness has transformed her from a 13 year old that was full of life involved in Youth Theatre, dance/signing/playing musical 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 NHS due to previous NICE guidelines, lack of GP and consultant knowledge of ME and the related illnesses. Initially my daughter was offered cognitive behavioural therapy, and graded exercise therapy. Neither addressed her symptoms. It was only when able to participate in online consultations with specialists in England that we were able to make progress in diagnoses and have started to address some of the symptoms that have caused the decline in her health.

Although unable to participate in education she has also experienced a failure to provide suitable alternatives to 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 me, and I am privileged to share it with members today.

I also received the following testimony from Jules, who said:

“For over ten years I was a therapist and devoted my life to helping others as best I could.

I first became ill but 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’ve been to psychology to be told it’s all in my head, pain management to be told to push through the pain and physiotherapy who told me my muscles were so weak there was nothing they could do!

I’ve been on so many prescribed medications and vitamins; I was taking in excess of 22 tablets a day and yet I would still crash.

I am 90% 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’m 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 can go days on end without being able to bathe or shower as I’m 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’s 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’m about to faint. I also have severe laboured breathing but there’s nothing recommended but rest and resting doesn’t cure ME.

I don’t 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 am in 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’s tough when I’m 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 and I can’t watch TV, or read a book, I have to have my curtains drawn and be in a darkroom. Sometimes I even need soft silicone 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 Jules are a plea to the minister to act now on the independent report that she has in her hands.

I call the minister, Maree Todd, to respond to the debate.

13:37  

I am pleased to respond to this important motion on behalf of the Government. I hope that, if I speak quickly, I will be able to respond to all the issues that have been raised.

I welcome today’s debate and I am grateful to everyone who has contributed their time and energy to it, and to the members of the public who have joined us in the public gallery. I am particularly grateful for the testimonies that we have heard from those with lived experience. As a minister, it is a powerful experience to hear the voices of the people of Scotland talking directly to Government.

It is clear from the voices that we have heard this afternoon that many people with ME/CFS have felt stigmatised or disbelieved by those who do not understand their condition. Therefore, the first thing that I have to say is that I want that stigma and disbelief to end. We have made a visible commitment to supporting the recent changes to the ME/CFS guidance, and we continue to work to raise awareness of the condition and the impact on those who live with it.

It is 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 that. We want to get it right for people, wherever they are in Scotland. I assure those living with ME/CFS that we are listening, and we hear you.

We know that it is critical that we listen to our stakeholders about what changes would be most impactful. That is why, last summer, we commissioned an independent stakeholder review of the NICE ME/CFS guideline. In doing so, we captured the input of the third sector, lived experience and clinical partners on how we drive forward the implementation of the guideline recommendations in Scotland. We specifically solicited views from parents and carers in that exercise because we absolutely recognise the importance of good-quality care and the right to education for young people living with ME/CFS.

Our neurological care and support framework is a five-year national strategy to improve care for people with neurological conditions, including ME/CFS. Through the framework, we have spent more than £2.1 million over the past two years on 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 guideline on ME/CFS, and in order to raise awareness, our national clinical director took 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 a similar letter to the Scottish board for academic medicine, which cascaded the information to Scottish medical schools.

I am pleased to say that we have 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.

Nearly 22 years ago, Merryn Fergusson, the wife of our greatly missed former Presiding Officer, Sir Alex Fergusson, wrote a book about her son Chris, entitled “What is Wrong with ME—A Case of Childhood Myalgic Encephalomyelitis: The Illness and the Controversy”, which looks at problems and misunderstandings around ME going back to the 1930s. Little progress has been made since that book was written. When does the minister expect fit-for-purpose care pathways to be in place in every health board in Scotland to ensure that we do not leave people behind and so that they get the treatment that they need?

I absolutely agree that progress has been slow. As we have all articulated, one of the blocks is the level of stigma and disbelief experienced by people with ME, although I believe that we are overcoming that particular hurdle.

We are currently liaising and working with the Royal College of General Practitioners Scotland on how to make progress on the condition, and how to the disseminate and promote the guidance.

We have heard a lot in the debate about the desire for specialist ME/CFS services. ME/CFS can present a broad range of symptoms and we know 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 and 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 agree with members who said that there may be lessons that we can learn from long 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 living with ME/CFS. We plan to publish that data by May this year in a report that will review the boards’ implementation of the updated NICE guidance, highlight areas of good practice and identify where further support is 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 understand the importance of supporting health and social care professionals in learning about the diagnosis and management of ME/CFS. That is why we have funded the creation and dissemination of an online continuing professional development course on ME/CFS for all GPs and health professionals in Scotland, which has been produced by Action for ME and partners. By September last year the module had been accessed 1,300 times, with evaluation data showing that it significantly improves 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 on ME/CFS for primary care clinicians. I understand that NES is currently reviewing feedback from the third sector on the module ahead of piloting it with GPs.

We all recognise the importance of research for better understanding of ME/CFS and the development of effective new approaches to the condition. Through the chief scientist’s office, we are inputting to the UK Clinical Research Collaboration’s ME/CFS research group, which is working to increase research capacity and the number and quality of ME/CFS research funding applications.

Presiding Officer, I close by saying that—

Will the member give way?

I am sorry; I am in the closing part of my speech.

We will continue to listen to the human stories and individual experiences behind the issues that have been raised today. We will continue working to identify how to drive up standards of care in ME/CFS, better embed the clinical guidelines and encourage research into the causes of and potential treatments for ME/CFS.

I assure members that we will continue to work with those with lived experience, the third sector and clinical partners to continue the improvement work that we have begun, and to maximise quality of life for people with ME/CFS across Scotland.

13:45 Meeting suspended.  

14:30 On resuming—