PARLIAMENTARY DEBATE
World ME Day - 1 May 2024 (Commons/Westminster Hall)
Debate Detail
Contributions from Fleur Anderson, are highlighted with a yellow border.
16:30:35
Sir Sajid Javid
Bromsgrove
I beg to move,
That this House has considered World ME Day.
It is a pleasure to serve under your chairmanship, Dame Siobhain, and I am extremely grateful to colleagues from across the House for their attendance.
There is no single universal experience of myalgic encephalomyelitis, otherwise known as ME. For those living with the condition, the distressing and familiar pattern can be all too clear: initial signs of fatigue, a drastic change in physical ability and activity, and the loss of mental focus and confidence.
The condition can begin after a battle with a viral infection, but for others the start of symptoms can simply seem unexplainable. Answers and hope are sought by visiting medical professionals, but too often ME patients are misdiagnosed or, at worst, dismissed entirely. Parents and carers who simply try their best can be chastised, as a once healthy person—a loved one—is slowly taken away by this cruel condition.
As a country, we have made tremendous progress in combatting so many diseases and illnesses. There has been a welcome step change in medical advancement and attitudes, but people with ME have not seen that progress—in fact, I would argue that they have been left behind. This debate provides an opportunity to share the experiences of people living with the condition ahead of World ME Day on 12 May and for us to consider what more can be done to improve experiences and outcomes for people across the United Kingdom. Today we are joined in person and online by many people who live with this condition, and I thank them for their continued strength.
When I was appointed Secretary of State for Health and Social Care, we were in the middle of fighting the pandemic. Of course, priorities and resources were naturally stretched, but the emergence of long covid saw renewed attention brought to ME. For me, the fight against that illness was not just an important policy area but simply very personal. My cousin, who is here today, has an amazing daughter who bravely battles this condition. Until the age of 13, she was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.
As Secretary of State, I set out my vision for a new approach to ME chronic fatigue syndrome in May 2022. I co-chaired a roundtable with the chief scientific adviser, Professor Lucy Chappell, to bring together experts, including people with lived experience, to discuss what needs to happen next. I also announced the Government’s intention to develop a cross-Government delivery plan for England. Two years later, although Ministers have understandably changed, I hope the determination that I had to tackle this condition remains in Government.
I was pleased to see the publication of an interim delivery plan by the Government in August last year. Supporting people with ME should be a cross-Government initiative. Although the work is rightly led by the Department of Health and Social Care, I was pleased to see that the plan was jointly published with the Department for Education and the Department for Work and Pensions.
That this House has considered World ME Day.
It is a pleasure to serve under your chairmanship, Dame Siobhain, and I am extremely grateful to colleagues from across the House for their attendance.
There is no single universal experience of myalgic encephalomyelitis, otherwise known as ME. For those living with the condition, the distressing and familiar pattern can be all too clear: initial signs of fatigue, a drastic change in physical ability and activity, and the loss of mental focus and confidence.
The condition can begin after a battle with a viral infection, but for others the start of symptoms can simply seem unexplainable. Answers and hope are sought by visiting medical professionals, but too often ME patients are misdiagnosed or, at worst, dismissed entirely. Parents and carers who simply try their best can be chastised, as a once healthy person—a loved one—is slowly taken away by this cruel condition.
As a country, we have made tremendous progress in combatting so many diseases and illnesses. There has been a welcome step change in medical advancement and attitudes, but people with ME have not seen that progress—in fact, I would argue that they have been left behind. This debate provides an opportunity to share the experiences of people living with the condition ahead of World ME Day on 12 May and for us to consider what more can be done to improve experiences and outcomes for people across the United Kingdom. Today we are joined in person and online by many people who live with this condition, and I thank them for their continued strength.
When I was appointed Secretary of State for Health and Social Care, we were in the middle of fighting the pandemic. Of course, priorities and resources were naturally stretched, but the emergence of long covid saw renewed attention brought to ME. For me, the fight against that illness was not just an important policy area but simply very personal. My cousin, who is here today, has an amazing daughter who bravely battles this condition. Until the age of 13, she was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.
As Secretary of State, I set out my vision for a new approach to ME chronic fatigue syndrome in May 2022. I co-chaired a roundtable with the chief scientific adviser, Professor Lucy Chappell, to bring together experts, including people with lived experience, to discuss what needs to happen next. I also announced the Government’s intention to develop a cross-Government delivery plan for England. Two years later, although Ministers have understandably changed, I hope the determination that I had to tackle this condition remains in Government.
I was pleased to see the publication of an interim delivery plan by the Government in August last year. Supporting people with ME should be a cross-Government initiative. Although the work is rightly led by the Department of Health and Social Care, I was pleased to see that the plan was jointly published with the Department for Education and the Department for Work and Pensions.
Dame Margaret Hodge
Barking
I am very pleased to serve under your chairship, Dame Siobhain. I want to raise the issue of the involvement of multiple Departments, and it relates to my constituent Sienna Wemyss, who is 16 years old. Sienna was diagnosed in 2022, but she still has not got an education, care and health plan. She got a place at our local Barking and Dagenham College, but when she arrived there, despite her mother having spoken to the teachers, she was sent home because she could not attend. She finds it difficult even to comb her hair, so she is at home and has lost out on her education.
Does the right hon. Member agree that it is really important that not only health but education plays its role? While I am on my feet, I should say that Sienna has to travel as there are no local health facilities to respond to her needs and to care for her. She has to travel into University College Hospital—miles from my constituents in Barking. Does the right hon. Member further agree that there should be local healthcare facilities to respond to the needs of people with this condition?
Does the right hon. Member agree that it is really important that not only health but education plays its role? While I am on my feet, I should say that Sienna has to travel as there are no local health facilities to respond to her needs and to care for her. She has to travel into University College Hospital—miles from my constituents in Barking. Does the right hon. Member further agree that there should be local healthcare facilities to respond to the needs of people with this condition?
16:37:01
Sir Sajid Javid
I thank the right hon. Member for her intervention, and I agree with her on both points. She first emphasises the importance of the Government’s final plan being a proper cross-Government plan; I hope the Minister will speak to the cross-Government nature of the work that he is leading on their behalf. I also agree with her point about local health support. That must also be addressed and covered in the final plan that is published. I have heard very similar stories from constituents and others, and I completely agree with what she said. I thank her again for that intervention.
When I committed the Government to developing a cross-Government delivery plan, I stated in a written statement to this House:
“officials will work with stakeholders ahead of publishing the delivery plan later this year.”
Despite the commitment that the delivery plan would be published by the end of 2022, it was not until August 2023 that an interim plan was published. In the ministerial foreword to that interim delivery plan, the Minister’s immediate predecessor—my hon. Friend the Member for Faversham and Mid Kent (Helen Whately)—stated:
“The final delivery plan will be published later this year”.
That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment.
I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess—or at the very latest, just after.
When I committed the Government to developing a cross-Government delivery plan, I stated in a written statement to this House:
“officials will work with stakeholders ahead of publishing the delivery plan later this year.”
Despite the commitment that the delivery plan would be published by the end of 2022, it was not until August 2023 that an interim plan was published. In the ministerial foreword to that interim delivery plan, the Minister’s immediate predecessor—my hon. Friend the Member for Faversham and Mid Kent (Helen Whately)—stated:
“The final delivery plan will be published later this year”.
That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment.
I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess—or at the very latest, just after.
Danny Kruger
Devizes
I pay tribute to my right hon. Friend for the leadership that he has shown, and continues to show, on this issue. I have been contacted by Phoebe van Dyke, a young woman living in my constituency who is struggling with ME. She is concerned about the extent of the skills of the general medical profession: too many of the doctors she encounters do not understand enough about the condition. Can my right hon. Friend assure me that the delivery plan that he wants the Government to bring forward will ensure that there is much better training across the range of medical professionals, so that they have the skills to understand the condition?
16:39:12
Sir Sajid Javid
I assure my hon. Friend that that is definitely what I want to see in the plan; perhaps more important now, however, is to hear that commitment from the Minister. It is touched on in the interim plan, but we all want to see that issue, among the others, addressed in that final cross-Government plan.
The interim delivery plan set out some of the current challenges that we must address to improve outcomes and experiences for individuals with ME. We must ensure that the final delivery plan focuses at least on two key areas: outcomes and experiences. However, making progress in these areas also requires us to address more fundamental problems. For example, there is a huge cultural problem, when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments. It is estimated—this number is often cited; I use it myself—that about 250,000 people are living with ME in the UK, but even that figure is 10 years old, highlighting the lack of data and research in this field. Without a clear dataset and understanding, tackling the issue of course becomes an even bigger uphill battle.
That is why there are research projects such as DecodeME. They are vital because they help to increase understanding and they serve as a critical platform for future work.
The interim delivery plan set out some of the current challenges that we must address to improve outcomes and experiences for individuals with ME. We must ensure that the final delivery plan focuses at least on two key areas: outcomes and experiences. However, making progress in these areas also requires us to address more fundamental problems. For example, there is a huge cultural problem, when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments. It is estimated—this number is often cited; I use it myself—that about 250,000 people are living with ME in the UK, but even that figure is 10 years old, highlighting the lack of data and research in this field. Without a clear dataset and understanding, tackling the issue of course becomes an even bigger uphill battle.
That is why there are research projects such as DecodeME. They are vital because they help to increase understanding and they serve as a critical platform for future work.
16:41:30
Helen Morgan
North Shropshire
Does the right hon. Gentleman agree with me that another issue faced by constituents is that the National Institute for Health and Care Excellence guidelines that were introduced are not being used by every single trust in the country? I think that only 28% of NHS trusts are using the NICE guidelines. Does he agree that consistency of treatment and approach would be an important step in ensuring that people can get the care that they need?
16:42:49
Sir Sajid Javid
Yes, I agree with the hon. Member. Indeed, those guidelines were changed while I was Secretary of State for Health and Social Care. I remember welcoming them, but the expectation of course was that they would be properly followed. As the hon. Member says, in some 70% of cases that does not seem to be the case. We all want that to be addressed. I hope that the Minister will be able to pick up that point when he responds.
Another example of research is a groundbreaking project on long covid and ME diagnostics called LOCOME. It is co-led by Action for ME, the University of Edinburgh and a computational biology company called PrecisionLife. It is hoped that that new project, which is utilising the data that has been gathered from the DecodeME project, will provide insights that will be able to create the first predictive diagnostic tools for ME and long covid. I take this opportunity to thank the charity Action for ME for its world-leading work on the project, its crucial support and the research and campaigning that it does to improve ME research and outcomes.
It is vital that we continue to support organisations such as Action for ME and researchers in this way. The focus of World ME Day in 2024, this year, will be to build a “Global Voice For ME”. In that spirit, it is important that we collaborate with allies across the globe to further research in this area. However, we know that, even with more research, it will be a long journey to achieve our desired outcomes. That is why improving the experiences of those living with ME, and their families, is also vital.
I know from my own engagement that individuals with lived experience often feel dismissed. I recall a recent Channel 4 report that even highlighted the case of a family who saw social services investigate the care of their daughter because they believed that she was being kept in bed against her will. If it were not for campaigning organisations such as Action for ME, the ME Association, the all-party parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the work of incredible individuals such as Sean O’Neill, who I believe joins us today and who has led an inspiring campaign in memory of his daughter, Maeve, the situation would feel almost hopeless. That is how it would feel if we did not have these people battling for more work to be done on ME. It is because of them that the case of this community is being heard, and having served in Government for so long myself, I know that when people speak up with the support of many honourable colleagues from right across the House, the Government must listen.
This year, 2024, marks 55 years since the World Health Organisation officially acknowledged ME. For too long, we have failed to recognise the severity of the condition for thousands of people across the UK. As we mark World ME Day on 12 May, we must renew our commitment to improving outcomes and experiences for everyone affected. It is great to see so many hon. Members from across the House in the Chamber, and I am grateful to everyone who has attended today’s debate in the Public Gallery, as well as those who may be joining online. Where such support exists, there is always hope.
The ambition is to improve the lives of people with the condition today, and to ensure that future generations have a brighter future. Helping make that ambition a reality is now the responsibility of the Minister, and I look forward to his response and the contribution of other hon. Members.
Another example of research is a groundbreaking project on long covid and ME diagnostics called LOCOME. It is co-led by Action for ME, the University of Edinburgh and a computational biology company called PrecisionLife. It is hoped that that new project, which is utilising the data that has been gathered from the DecodeME project, will provide insights that will be able to create the first predictive diagnostic tools for ME and long covid. I take this opportunity to thank the charity Action for ME for its world-leading work on the project, its crucial support and the research and campaigning that it does to improve ME research and outcomes.
It is vital that we continue to support organisations such as Action for ME and researchers in this way. The focus of World ME Day in 2024, this year, will be to build a “Global Voice For ME”. In that spirit, it is important that we collaborate with allies across the globe to further research in this area. However, we know that, even with more research, it will be a long journey to achieve our desired outcomes. That is why improving the experiences of those living with ME, and their families, is also vital.
I know from my own engagement that individuals with lived experience often feel dismissed. I recall a recent Channel 4 report that even highlighted the case of a family who saw social services investigate the care of their daughter because they believed that she was being kept in bed against her will. If it were not for campaigning organisations such as Action for ME, the ME Association, the all-party parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the work of incredible individuals such as Sean O’Neill, who I believe joins us today and who has led an inspiring campaign in memory of his daughter, Maeve, the situation would feel almost hopeless. That is how it would feel if we did not have these people battling for more work to be done on ME. It is because of them that the case of this community is being heard, and having served in Government for so long myself, I know that when people speak up with the support of many honourable colleagues from right across the House, the Government must listen.
This year, 2024, marks 55 years since the World Health Organisation officially acknowledged ME. For too long, we have failed to recognise the severity of the condition for thousands of people across the UK. As we mark World ME Day on 12 May, we must renew our commitment to improving outcomes and experiences for everyone affected. It is great to see so many hon. Members from across the House in the Chamber, and I am grateful to everyone who has attended today’s debate in the Public Gallery, as well as those who may be joining online. Where such support exists, there is always hope.
The ambition is to improve the lives of people with the condition today, and to ensure that future generations have a brighter future. Helping make that ambition a reality is now the responsibility of the Minister, and I look forward to his response and the contribution of other hon. Members.
16:45:53
in the Chair
Dame Siobhain McDonagh
I remind Members that they should bob if they wish to be called in the debate.
16:49:54
Fleur Anderson
Putney
It is an honour to serve under your chairship, Dame Siobhain, and to be speaking at this important time, ahead of World ME Day on 12 May. I congratulate and thank the right hon. Member for Bromsgrove (Sir Sajid Javid) for securing the debate and for continuing to champion the cause, which is so needed. I also thank Action for ME for its research and campaigning, and for providing visibility for so many people who have ME who are bedbound and housebound, and cannot speak for themselves. That is why I have been championing this condition, because so many of my constituents have been in touch with me.
To be honest, when I was pregnant, I had very severe morning sickness. It was not morning sickness: it meant that I was bedbound for many months. I got an inkling, I think, of what is suffered by people who have ME. However, they suffer for so long with such little hope because, as the right hon. Member said, there is no treatment and no cure. To raise those issues, and to talk about the research and treatment that are needed, and the understanding that is needed in workplaces, schools and the healthcare system, is important. This debate will mark a huge step forward for that.
ME is a chronic illness that affects multiple body systems and leaves those suffering unable to take part in everyday activities. In the UK, we know that at least 250,00 people suffer from ME. However, that is an outdated statistic that has not been updated for over a decade. The real figure is likely to be far higher. An estimated 1.3 million people live with ME or ME-like symptoms, and 50% of people with long covid have symptoms that mirror ME. One in four of those is housebound. Women are five times more likely to develop ME, and to have more symptoms from their ME, than men. I think that might be at the heart of why it has been such an underfunded and neglected disease, because it is predominantly women who are suffering more than men.
People with ME suffer disproportionately high levels of stigma and lack of understanding compared with other major chronic illnesses. That ignorance makes it more of a challenge to address and treat, and they suffer misunderstandings in education, work and healthcare. Many constituents have shared such stories with me. They have told me stories about personal independence payment assessments as well, which do not meet the needs of a fluctuating condition, and do not take account of the condition in the timings and the way that people are assessed, leading to them receiving less support from the state.
Over the last 10 years, only £8.05 million has been spent on ME research. If that had been equitable to other illnesses, ME would have received over £10 million or more. Without urgent research, those estimated 250,000 people in the UK living with the illness—and many more—will continue to feel unseen and left behind. That inaction comes at a significant cost. Without research, people living with ME will continue to suffer from a range of debilitating symptoms that push them towards the edge of society. The links with long covid offer hope for research, and should be entirely embraced. I hope that it will be embraced in the plan that we hope will be published soon and that the Minister will tell us about in his speech.
The Government claim that they want to get people back to work, yet they continue to underfund vital investment in ME that could help thousands of people to rejoin the workforce. While the Government continue to dither and delay on that plan, others are stepping up. Action for ME is co-leading a pioneering research project into ME to uncover its genetic causes. It is called DecodeME and is funded by the Medical Research Council and the National Institute for Health Research. Understanding how ME affects people is the first step towards developing effective treatments.
Although I and others welcomed the Government’s announcement of the cross-Government ME delivery plan, which was announced by the right hon. Member for Bromsgrove on ME Day in May 2022, the publication of the final plan, as has been outlined, has been delayed again and again, but it is badly needed by sufferers across the country. My constituents are feeling the direct implications of the lack of funding for research. I especially want to highlight the inadequacy of secondary care.
Zoe, one of my constituents, wrote:
“I’m lucky that my GP is great and recognised the symptoms early and found me a good clinic to go to. But ongoing support in secondary care is non-existent. Compared to others, I was…lucky to have what I got, but it was six appointments with a consultant and his team and that’s it. No ongoing care, no ongoing support. Because of the complex nature of the illness I’ve had to be referred to multiple secondary care clinics to manage all my ongoing symptoms. I go to St George’s, Bart’s, Kings, UCL and the Royal Free, at best they’re well meaning, but not well educated about ME, at worst I experience a huge amount of medical gas lighting or complete indifference, disbelief or disinterest in the ME. (I had such a poor experience with secondary care this week that the stress of dealing with the doctor/clinic has further exacerbated the flare of symptoms.) It’s a lot to expect a person with ME to manage.”
Just yesterday, I was walking through Putney and Donna in my constituency came up to me to tell me about the hugely life-limiting impact that ME has had on her. She was in a wheelchair and said that that trip out to get a prescription means that she will not be able to go out again for the next two weeks. She said she is constantly misunderstood and neglected in the health system.
Recently, the cases of Carla, Milly and Karen—all young women in hospital with severe ME and struggling to access the care they need, the appropriate feeding, tests and medical care—paint a picture of a broken system. They have been treated as psychological cases, not medical and physical. Carla, Milly and Karen have been let down time and again. I urge the Government not to permit the growing cases of ME across the country to morph into a health crisis for which there is no cure.
I will end with a call for five actions: first, ending the stigma and taboo in healthcare situations, work and schools; secondly, the full implementation of NICE’s 2021 guidelines on ME and chronic fatigue syndrome, including diagnosis across the country; thirdly, funding research into severe ME and joining that up with research into long covid; fourthly, looking into the situation in care for Carla, Milly and Karen and poor hospital care for all other sufferers of ME; and fifthly, publishing, funding and implementing the cross-departmental ME delivery plan before the general election.
I hope the Minister has written all of that down. I hope to hear about it later, and I hope that this debate will mark a step change in the understanding of people with ME and hope for the future.
To be honest, when I was pregnant, I had very severe morning sickness. It was not morning sickness: it meant that I was bedbound for many months. I got an inkling, I think, of what is suffered by people who have ME. However, they suffer for so long with such little hope because, as the right hon. Member said, there is no treatment and no cure. To raise those issues, and to talk about the research and treatment that are needed, and the understanding that is needed in workplaces, schools and the healthcare system, is important. This debate will mark a huge step forward for that.
ME is a chronic illness that affects multiple body systems and leaves those suffering unable to take part in everyday activities. In the UK, we know that at least 250,00 people suffer from ME. However, that is an outdated statistic that has not been updated for over a decade. The real figure is likely to be far higher. An estimated 1.3 million people live with ME or ME-like symptoms, and 50% of people with long covid have symptoms that mirror ME. One in four of those is housebound. Women are five times more likely to develop ME, and to have more symptoms from their ME, than men. I think that might be at the heart of why it has been such an underfunded and neglected disease, because it is predominantly women who are suffering more than men.
People with ME suffer disproportionately high levels of stigma and lack of understanding compared with other major chronic illnesses. That ignorance makes it more of a challenge to address and treat, and they suffer misunderstandings in education, work and healthcare. Many constituents have shared such stories with me. They have told me stories about personal independence payment assessments as well, which do not meet the needs of a fluctuating condition, and do not take account of the condition in the timings and the way that people are assessed, leading to them receiving less support from the state.
Over the last 10 years, only £8.05 million has been spent on ME research. If that had been equitable to other illnesses, ME would have received over £10 million or more. Without urgent research, those estimated 250,000 people in the UK living with the illness—and many more—will continue to feel unseen and left behind. That inaction comes at a significant cost. Without research, people living with ME will continue to suffer from a range of debilitating symptoms that push them towards the edge of society. The links with long covid offer hope for research, and should be entirely embraced. I hope that it will be embraced in the plan that we hope will be published soon and that the Minister will tell us about in his speech.
The Government claim that they want to get people back to work, yet they continue to underfund vital investment in ME that could help thousands of people to rejoin the workforce. While the Government continue to dither and delay on that plan, others are stepping up. Action for ME is co-leading a pioneering research project into ME to uncover its genetic causes. It is called DecodeME and is funded by the Medical Research Council and the National Institute for Health Research. Understanding how ME affects people is the first step towards developing effective treatments.
Although I and others welcomed the Government’s announcement of the cross-Government ME delivery plan, which was announced by the right hon. Member for Bromsgrove on ME Day in May 2022, the publication of the final plan, as has been outlined, has been delayed again and again, but it is badly needed by sufferers across the country. My constituents are feeling the direct implications of the lack of funding for research. I especially want to highlight the inadequacy of secondary care.
Zoe, one of my constituents, wrote:
“I’m lucky that my GP is great and recognised the symptoms early and found me a good clinic to go to. But ongoing support in secondary care is non-existent. Compared to others, I was…lucky to have what I got, but it was six appointments with a consultant and his team and that’s it. No ongoing care, no ongoing support. Because of the complex nature of the illness I’ve had to be referred to multiple secondary care clinics to manage all my ongoing symptoms. I go to St George’s, Bart’s, Kings, UCL and the Royal Free, at best they’re well meaning, but not well educated about ME, at worst I experience a huge amount of medical gas lighting or complete indifference, disbelief or disinterest in the ME. (I had such a poor experience with secondary care this week that the stress of dealing with the doctor/clinic has further exacerbated the flare of symptoms.) It’s a lot to expect a person with ME to manage.”
Just yesterday, I was walking through Putney and Donna in my constituency came up to me to tell me about the hugely life-limiting impact that ME has had on her. She was in a wheelchair and said that that trip out to get a prescription means that she will not be able to go out again for the next two weeks. She said she is constantly misunderstood and neglected in the health system.
Recently, the cases of Carla, Milly and Karen—all young women in hospital with severe ME and struggling to access the care they need, the appropriate feeding, tests and medical care—paint a picture of a broken system. They have been treated as psychological cases, not medical and physical. Carla, Milly and Karen have been let down time and again. I urge the Government not to permit the growing cases of ME across the country to morph into a health crisis for which there is no cure.
I will end with a call for five actions: first, ending the stigma and taboo in healthcare situations, work and schools; secondly, the full implementation of NICE’s 2021 guidelines on ME and chronic fatigue syndrome, including diagnosis across the country; thirdly, funding research into severe ME and joining that up with research into long covid; fourthly, looking into the situation in care for Carla, Milly and Karen and poor hospital care for all other sufferers of ME; and fifthly, publishing, funding and implementing the cross-departmental ME delivery plan before the general election.
I hope the Minister has written all of that down. I hope to hear about it later, and I hope that this debate will mark a step change in the understanding of people with ME and hope for the future.
16:53:18
Caroline Nokes
Romsey and Southampton North
It is a pleasure to see you in the Chair, Dame Siobhain. I congratulate my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) on his leadership on this issue. We know that he started the train of getting work done on ME when he was Health Secretary. Too often in this place, we move on from Departments and never speak of them again, but he has not. He has championed the cause of the sufferers of ME, and indeed their families, with real vigour.
It seems bizarre in this place to refer to long covid with a welcome message, but long covid has shone a spotlight back on ME. We know that it is a post-viral condition, but we do not know why. The number of sufferers of long covid has given us an opportunity to look again at ME. Hopefully, in this place some of us will begin to understand more and broaden our knowledge of the condition. My right hon. Friend taken a new approach, and my constituents certainly wish to extend their thanks to him for that.
I always say that I am blessed with constituents in Romsey and Southampton North who are not only articulate and willing to share their views with me, but in many instances are often experts as well. Professor Sir Stephen Holgate contacted me ahead of the debate to make the pertinent point that, for sufferers of ME, many of whom have been bedbound for years, surely I could spend an hour of my time raising their plight in this Chamber. I am certainly very pleased to do so. He highlighted, as did the hon. Member for Putney (Fleur Anderson), the well-established sex bias among sufferers of ME. Of the 17,000 sufferers recently surveyed, women made up 83.5% of the respondents. We know that they are five times more likely to suffer than their male counterparts.
I say to the Minister, very gently—an unusual stance for me—that we have to do more about the bias that exists in medical research and clinical trials. We have to stop the situation, which prevails to this day, where too often conditions suffered by women are portrayed as them being simply hysterical. ME is a serious condition. It is not all in the mind, as my constituents have been told on too many occasions. We need to ensure not only more investment into research to find the causes of ME and hopefully more effective treatments—and of course, the holy grail, a cure—but research focused on the women who need it.
I welcome the cross-Government delivery plan that was set in train by my right hon. Friend the Member for Bromsgrove, but we need to see it. We need to see not just the interim version but the final plan, and we need it to be delivered. We need it to be rolled out into every trust and integrated care board. We need it to be effective for our constituents, which brings me on to my next point: my constituent. I was contacted by a mother, Elaine. The point she made in her email was that she wants her voice and the voice of her daughter to be heard. Her daughter was a high achiever, training to be a dancer. She had already secured 5 A-levels when she was struck down with ME. The words that she used are heartbreaking. She has been stigmatised, gaslighted and ridiculed. As a result, she now avoids doctors. She avoids going to get the very help that she needs because she fears that her condition will lead to ridicule.
That is simply not acceptable in a 21st-century health system. We have to do more to ensure greater awareness not just in the Chamber today, but out in our ICBs and GP surgeries, so that the sufferers who are presenting for the first time do not get ridiculed or labelled as hysterical women, but actually get the help that they need. We cannot have a situation where our constituents are avoiding the people they need to turn to for help.
As I have said, there is bias that we have to overcome. There is a gap in research funding. Only £8 million has been spent on ME research over the last 10 years, which is simply disproportionate to the number of sufferers—it should be several times that figure—and we still know less about every aspect of female biology than we do about male biology. I would like to hear a commitment from the Minister that, while he is in this role, he will do his utmost to eliminate the gender bias that we still see in medical research.
It seems bizarre in this place to refer to long covid with a welcome message, but long covid has shone a spotlight back on ME. We know that it is a post-viral condition, but we do not know why. The number of sufferers of long covid has given us an opportunity to look again at ME. Hopefully, in this place some of us will begin to understand more and broaden our knowledge of the condition. My right hon. Friend taken a new approach, and my constituents certainly wish to extend their thanks to him for that.
I always say that I am blessed with constituents in Romsey and Southampton North who are not only articulate and willing to share their views with me, but in many instances are often experts as well. Professor Sir Stephen Holgate contacted me ahead of the debate to make the pertinent point that, for sufferers of ME, many of whom have been bedbound for years, surely I could spend an hour of my time raising their plight in this Chamber. I am certainly very pleased to do so. He highlighted, as did the hon. Member for Putney (Fleur Anderson), the well-established sex bias among sufferers of ME. Of the 17,000 sufferers recently surveyed, women made up 83.5% of the respondents. We know that they are five times more likely to suffer than their male counterparts.
I say to the Minister, very gently—an unusual stance for me—that we have to do more about the bias that exists in medical research and clinical trials. We have to stop the situation, which prevails to this day, where too often conditions suffered by women are portrayed as them being simply hysterical. ME is a serious condition. It is not all in the mind, as my constituents have been told on too many occasions. We need to ensure not only more investment into research to find the causes of ME and hopefully more effective treatments—and of course, the holy grail, a cure—but research focused on the women who need it.
I welcome the cross-Government delivery plan that was set in train by my right hon. Friend the Member for Bromsgrove, but we need to see it. We need to see not just the interim version but the final plan, and we need it to be delivered. We need it to be rolled out into every trust and integrated care board. We need it to be effective for our constituents, which brings me on to my next point: my constituent. I was contacted by a mother, Elaine. The point she made in her email was that she wants her voice and the voice of her daughter to be heard. Her daughter was a high achiever, training to be a dancer. She had already secured 5 A-levels when she was struck down with ME. The words that she used are heartbreaking. She has been stigmatised, gaslighted and ridiculed. As a result, she now avoids doctors. She avoids going to get the very help that she needs because she fears that her condition will lead to ridicule.
That is simply not acceptable in a 21st-century health system. We have to do more to ensure greater awareness not just in the Chamber today, but out in our ICBs and GP surgeries, so that the sufferers who are presenting for the first time do not get ridiculed or labelled as hysterical women, but actually get the help that they need. We cannot have a situation where our constituents are avoiding the people they need to turn to for help.
As I have said, there is bias that we have to overcome. There is a gap in research funding. Only £8 million has been spent on ME research over the last 10 years, which is simply disproportionate to the number of sufferers—it should be several times that figure—and we still know less about every aspect of female biology than we do about male biology. I would like to hear a commitment from the Minister that, while he is in this role, he will do his utmost to eliminate the gender bias that we still see in medical research.
16:58:08
John McDonnell
Hayes and Harlington
I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) not just on securing the debate, but on the groundbreaking work that he did in establishing the delivery plan. We are all grateful for that.
We all come to this debate with our own experiences. My first constituency case was nearly 30 years ago. I remember it well. It was heartbreaking: a young women who had a full-time job, was bringing up her family with two children and was active in her local community and trade union, went down with a condition that she never understood. It was not recognised for a long time, even by a local doctor. There was a lot of stigma attached to it at that time—I think a few members of the media were running stories like that. It took her years and a lot of support before she could come to terms with it and re-engage fully with her life.
Debates like this give us the opportunity to share those experiences, but they also prompt organisations to send us briefings. I congratulate Action for ME on the excellent briefing that it has circulated. It has brought us up to speed on a whole range of issues and focused us in advance. I want to respond in support of the half a dozen demands made by my hon. Friend the Member for Putney (Fleur Anderson). The first is about the recognition of the consequences and scale of ME in our society. One area that we have not explored enough is the mental health consequences of ME. In the cases that I have dealt with, ME has led people virtually to breakdown, because of the frustration of no longer being able to live an active life, as well as facing all the barriers and the stigma. We do not fully understand the range of consequences.
I fully agree with the point about research. Demand is doubling, at least. I was shocked that the figures in the briefing were so low after all this time and all the debates that we have had. Long covid has also brought a new dimension to the debate. I am receiving lots of representations from constituents about long covid; it is like we are going through the ME process all over again. I congratulate Action for ME. As the right hon. Member for Bromsgrove said, the establishment of the centre of excellence in Edinburgh is a huge breakthrough; it will be a world leader.
I thought that the NICE guidelines were being rolled out more effectively, so I was shocked that 76% of ICBs do not have a specialist service. We need to think about how that has gone wrong and what will put it right.
My hon. Friend the Member for Putney made a point about benefits. The Government are yet again reforming the benefit system, and I am worried about the reforms. I have met with a range of disability groups, and people are petrified. There is real fear out there, including among people with this particular condition. Anyone who has assisted a constituent through the appeal process understands how difficult it is to get it across that someone has a fluctuating condition, as was mentioned. I do not criticise clinicians, but there is still a lack of thorough understanding among some clinicians about the condition.
I want to make one further point, which has not been raised. I have come across case after case in which protection at work has not been in place, and people have lost their jobs, promotion, or access to training and so on. The reasonable adjustments that we thought we had built into the legislation have not been made. That needs to be reviewed going into the next period. There will be new employment legislation, certainly if there is a change of Government, and perhaps whether or not there is a change of Government. There are issues about the quality of employed life that have to be addressed, and this is one of them.
I am grateful for the debate, because I will be able to report back to constituents that Parliament has discussed the matter. I have the same confidence that the right hon. Member for Bromsgrove has: when a group of MPs works on a cross-party basis and makes noise like this, civil servants and Ministers listen. I hope that the Minister can report today particularly on the timing of the delivery plan, which will give us so much hope.
We all come to this debate with our own experiences. My first constituency case was nearly 30 years ago. I remember it well. It was heartbreaking: a young women who had a full-time job, was bringing up her family with two children and was active in her local community and trade union, went down with a condition that she never understood. It was not recognised for a long time, even by a local doctor. There was a lot of stigma attached to it at that time—I think a few members of the media were running stories like that. It took her years and a lot of support before she could come to terms with it and re-engage fully with her life.
Debates like this give us the opportunity to share those experiences, but they also prompt organisations to send us briefings. I congratulate Action for ME on the excellent briefing that it has circulated. It has brought us up to speed on a whole range of issues and focused us in advance. I want to respond in support of the half a dozen demands made by my hon. Friend the Member for Putney (Fleur Anderson). The first is about the recognition of the consequences and scale of ME in our society. One area that we have not explored enough is the mental health consequences of ME. In the cases that I have dealt with, ME has led people virtually to breakdown, because of the frustration of no longer being able to live an active life, as well as facing all the barriers and the stigma. We do not fully understand the range of consequences.
I fully agree with the point about research. Demand is doubling, at least. I was shocked that the figures in the briefing were so low after all this time and all the debates that we have had. Long covid has also brought a new dimension to the debate. I am receiving lots of representations from constituents about long covid; it is like we are going through the ME process all over again. I congratulate Action for ME. As the right hon. Member for Bromsgrove said, the establishment of the centre of excellence in Edinburgh is a huge breakthrough; it will be a world leader.
I thought that the NICE guidelines were being rolled out more effectively, so I was shocked that 76% of ICBs do not have a specialist service. We need to think about how that has gone wrong and what will put it right.
My hon. Friend the Member for Putney made a point about benefits. The Government are yet again reforming the benefit system, and I am worried about the reforms. I have met with a range of disability groups, and people are petrified. There is real fear out there, including among people with this particular condition. Anyone who has assisted a constituent through the appeal process understands how difficult it is to get it across that someone has a fluctuating condition, as was mentioned. I do not criticise clinicians, but there is still a lack of thorough understanding among some clinicians about the condition.
I want to make one further point, which has not been raised. I have come across case after case in which protection at work has not been in place, and people have lost their jobs, promotion, or access to training and so on. The reasonable adjustments that we thought we had built into the legislation have not been made. That needs to be reviewed going into the next period. There will be new employment legislation, certainly if there is a change of Government, and perhaps whether or not there is a change of Government. There are issues about the quality of employed life that have to be addressed, and this is one of them.
I am grateful for the debate, because I will be able to report back to constituents that Parliament has discussed the matter. I have the same confidence that the right hon. Member for Bromsgrove has: when a group of MPs works on a cross-party basis and makes noise like this, civil servants and Ministers listen. I hope that the Minister can report today particularly on the timing of the delivery plan, which will give us so much hope.
in the Chair
Dame Siobhain McDonagh
I will call Jim Shannon next. If he would not mind, I ask him to voluntarily restrict his comments so that at 5.08 pm I can call the Opposition spokesperson for five minutes and the Minister for 10 minutes, because I think people want to hear what the Minister has to say.
Jim Shannon
Strangford
I certainly will do exactly that; I had planned a five-minute contribution.
I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) on highlighting World ME Day. I listened to the right hon. Member for Hayes and Harlington (John McDonnell). When I was first introduced as an elected representative, as a Member of the Assembly at Stormont back in 1998, a person with ME came to me one day. I will be honest: I had no idea what it was. But I knew one thing, which was that that lady was ill. I am no wiser or smarter than anybody else, and I am not a doctor, but I can recognise pain. I can recognise a disability that hurts. It was making her life absolutely unworkable.
I helped her with her benefits; incidentally, we won on appeal. We won because if I could see what that lady was going through, the four people on the panel could see it, too. The right hon. Member for Hayes and Harlington referred to the appeals process. I always ask the person, “How many days a week are you ill?” and the person will tell you. Sometimes they are ill for a week, sometimes they are not ill and sometimes they are ill for three of the seven days. The point I am making is that they are ill, and it is a case of proving that.
The article by Hope 4 ME & Fibro Northern Ireland really summarises how the ME community feels:
“In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. An estimated 55+ million individuals worldwide are living with the debilitating effects of this condition.”
It is an epidemic across the world.
“Amidst these escalating numbers, Hope 4 ME & Fibro Northern Ireland proudly stands alongside World ME Alliance members across the globe. We collectively amplify support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.”
As an active Member of Parliament, a former Member of the Northern Ireland Assembly and former councillor—I think this is now my 39th year in elected service—I have seen the debilitating effects suffered by those with ME suffer. One of the harsh realities is that there is no cure. Individuals grappling with ME often endure both the physical toll of the illness and the stigmas that accompany it. It is imperative that we as a global community and in this House come together to address these gaps in understanding, treatment and research. That is where we in this place have a part to play. The right hon. Member for Bromsgrove set the scene well, as did others who have spoken; those who follow will tell it again.
I do not believe that we have done more than scratch the surface of fulfilling our obligation to those who are in inexplicable pain daily and who are made to feel as if it is somehow only in their head. It is not. I am not a doctor, but I can see pain; I can see agony; I can see trauma. I can see people who need help. If I can do that, everybody in this room could do the same, because that is what we do every day when we deal with people. They live feeling ashamed of an illness, when most other illnesses are accepted as being out of the victim’s hands. There is work to do in how our health and benefits Departments view ME—there is a big role for them to play—and subsequently treat those who suffer from ME and associated illnesses. Support should be offered not just to them, but also to the families—never forget the families. It is not just that one person suffering; the whole family suffers, because they can see the pain and the agony. Undoubtedly, the burden is often shared with the entire household, emotionally, physically and financially.
On World ME Day, we need to be aware that the people we may see for a brief moment may be fighting a battle with pain that we cannot fully understand. We cannot share that pain, but we can hopefully appreciate what they are saying. It is our job in this place to fight harder for them. For them, this debate is a continuation of that very battle they have fought. We fight today alongside them.
I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) on highlighting World ME Day. I listened to the right hon. Member for Hayes and Harlington (John McDonnell). When I was first introduced as an elected representative, as a Member of the Assembly at Stormont back in 1998, a person with ME came to me one day. I will be honest: I had no idea what it was. But I knew one thing, which was that that lady was ill. I am no wiser or smarter than anybody else, and I am not a doctor, but I can recognise pain. I can recognise a disability that hurts. It was making her life absolutely unworkable.
I helped her with her benefits; incidentally, we won on appeal. We won because if I could see what that lady was going through, the four people on the panel could see it, too. The right hon. Member for Hayes and Harlington referred to the appeals process. I always ask the person, “How many days a week are you ill?” and the person will tell you. Sometimes they are ill for a week, sometimes they are not ill and sometimes they are ill for three of the seven days. The point I am making is that they are ill, and it is a case of proving that.
The article by Hope 4 ME & Fibro Northern Ireland really summarises how the ME community feels:
“In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. An estimated 55+ million individuals worldwide are living with the debilitating effects of this condition.”
It is an epidemic across the world.
“Amidst these escalating numbers, Hope 4 ME & Fibro Northern Ireland proudly stands alongside World ME Alliance members across the globe. We collectively amplify support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.”
As an active Member of Parliament, a former Member of the Northern Ireland Assembly and former councillor—I think this is now my 39th year in elected service—I have seen the debilitating effects suffered by those with ME suffer. One of the harsh realities is that there is no cure. Individuals grappling with ME often endure both the physical toll of the illness and the stigmas that accompany it. It is imperative that we as a global community and in this House come together to address these gaps in understanding, treatment and research. That is where we in this place have a part to play. The right hon. Member for Bromsgrove set the scene well, as did others who have spoken; those who follow will tell it again.
I do not believe that we have done more than scratch the surface of fulfilling our obligation to those who are in inexplicable pain daily and who are made to feel as if it is somehow only in their head. It is not. I am not a doctor, but I can see pain; I can see agony; I can see trauma. I can see people who need help. If I can do that, everybody in this room could do the same, because that is what we do every day when we deal with people. They live feeling ashamed of an illness, when most other illnesses are accepted as being out of the victim’s hands. There is work to do in how our health and benefits Departments view ME—there is a big role for them to play—and subsequently treat those who suffer from ME and associated illnesses. Support should be offered not just to them, but also to the families—never forget the families. It is not just that one person suffering; the whole family suffers, because they can see the pain and the agony. Undoubtedly, the burden is often shared with the entire household, emotionally, physically and financially.
On World ME Day, we need to be aware that the people we may see for a brief moment may be fighting a battle with pain that we cannot fully understand. We cannot share that pain, but we can hopefully appreciate what they are saying. It is our job in this place to fight harder for them. For them, this debate is a continuation of that very battle they have fought. We fight today alongside them.
17:10:18
Carol Monaghan
Glasgow North West
It is a pleasure to serve under your chairmanship, Dame Siobhain. I will start by declaring an interest as the chair of the all-party parliamentary group on myalgic encephalomyelitis. I thank the right hon. Member for Bromsgrove (Sir Sajid Javid) not just for bringing forward this debate, but for the work he has done. It is the second anniversary of the publication of a report produced by the APPG called “Rethinking ME”. As Health Secretary, the right hon. Gentleman came to its launch event here in Parliament, and that was very much appreciated by the ME community. More importantly, under his direction, the Department of Health and Social Care started engaging with the APPG in a way that had not happened previously, to learn about our findings and recommendations from the report.
Following that, the interim delivery plan for ME was announced and the consultation opened up for those with lived experience. The right hon. Gentleman’s hand was all over that work, which has really been transformational in getting the opinions of those who are actually living with ME on a day-to-day basis. The publication of the final plan, however, has been delayed several times, as we have heard already. I will press the Minister on this: we need to know when the final delivery plan will be produced. We do not want it to be after a general election, because another Government might mean different priorities. We need that plan now.
Another step that has taken the situation forward for those with ME was the publication of the new NICE guidelines in 2021. That replaced the previous guidelines, which had recommended graded exercise therapy as a treatment for ME—a treatment that many had undertaken, and many had had their symptoms made far worse as a result. It was good to see the publication of those guidelines, but there is still much more to be done. We heard from the hon. Member for Putney (Fleur Anderson) and the right hon. Member for Romsey and Southampton North (Caroline Nokes) how this condition impacts women far more than men, so there has to be a focus on women in research, treatment and diagnosis.
People with ME experience a lot of issues, such as a lack of understanding from healthcare professionals, as was highlighted by the right hon. Member for Hayes and Harlington (John McDonnell). That leads to delays in diagnosis and to inappropriate treatments. We are still hearing of people who have been forced through graded exercise—that is, the old NICE guidelines, not the new ones. Parents of children with ME find themselves subject to child protection investigations; that has to stop. Of course, many people face difficulties negotiating the welfare system, as was highlighted by the hon. Member for Strangford (Jim Shannon). According to Ann Innes, a welfare rights adviser with the ME Association,
“Repeated assessments are a huge drain on people with ME. They put them back considerably, in terms of their health”.
One of the areas of greatest concern is the treatment of those with severe ME. It is estimated that one in four people with ME has it severely, which means they are house-bound or bed-bound and need 24-hour care. Between 2017 and 2021, 62 deaths have been attributed to ME, and the tragic death of Maeve Boothby-O’Neill highlights the need for urgent action. Maeve was repeatedly hospitalised and discharged due to a lack of specialist services for ME patients. The absence of known treatments meant that her diagnosis sadly came too late. I pay tribute to her dad Sean O’Neill, who joins us this afternoon, for the work he has done.
Over the next couple of months, the APPG will be taking evidence from those affected by severe ME. I encourage Members present to join us for those sessions, where we will hear what we can do as parliamentarians and what we should be doing. If outcomes are to improve, increased funding for biomedical research is vital. I ask the Minister how much funding there will be, how it will be delivered and where we will see that. I know that I am out of time, but I will pay tribute quickly to a couple of people: the Countess of Mar from the other place, who has sadly had to retire, but she has done decades of work; Sonya Chowdhury from Action for ME, who joins us; Forward ME; the ME Association; and all those affected by ME and their families, who have done so much work to bring the issue to the attention of Members in this place.
Following that, the interim delivery plan for ME was announced and the consultation opened up for those with lived experience. The right hon. Gentleman’s hand was all over that work, which has really been transformational in getting the opinions of those who are actually living with ME on a day-to-day basis. The publication of the final plan, however, has been delayed several times, as we have heard already. I will press the Minister on this: we need to know when the final delivery plan will be produced. We do not want it to be after a general election, because another Government might mean different priorities. We need that plan now.
Another step that has taken the situation forward for those with ME was the publication of the new NICE guidelines in 2021. That replaced the previous guidelines, which had recommended graded exercise therapy as a treatment for ME—a treatment that many had undertaken, and many had had their symptoms made far worse as a result. It was good to see the publication of those guidelines, but there is still much more to be done. We heard from the hon. Member for Putney (Fleur Anderson) and the right hon. Member for Romsey and Southampton North (Caroline Nokes) how this condition impacts women far more than men, so there has to be a focus on women in research, treatment and diagnosis.
People with ME experience a lot of issues, such as a lack of understanding from healthcare professionals, as was highlighted by the right hon. Member for Hayes and Harlington (John McDonnell). That leads to delays in diagnosis and to inappropriate treatments. We are still hearing of people who have been forced through graded exercise—that is, the old NICE guidelines, not the new ones. Parents of children with ME find themselves subject to child protection investigations; that has to stop. Of course, many people face difficulties negotiating the welfare system, as was highlighted by the hon. Member for Strangford (Jim Shannon). According to Ann Innes, a welfare rights adviser with the ME Association,
“Repeated assessments are a huge drain on people with ME. They put them back considerably, in terms of their health”.
One of the areas of greatest concern is the treatment of those with severe ME. It is estimated that one in four people with ME has it severely, which means they are house-bound or bed-bound and need 24-hour care. Between 2017 and 2021, 62 deaths have been attributed to ME, and the tragic death of Maeve Boothby-O’Neill highlights the need for urgent action. Maeve was repeatedly hospitalised and discharged due to a lack of specialist services for ME patients. The absence of known treatments meant that her diagnosis sadly came too late. I pay tribute to her dad Sean O’Neill, who joins us this afternoon, for the work he has done.
Over the next couple of months, the APPG will be taking evidence from those affected by severe ME. I encourage Members present to join us for those sessions, where we will hear what we can do as parliamentarians and what we should be doing. If outcomes are to improve, increased funding for biomedical research is vital. I ask the Minister how much funding there will be, how it will be delivered and where we will see that. I know that I am out of time, but I will pay tribute quickly to a couple of people: the Countess of Mar from the other place, who has sadly had to retire, but she has done decades of work; Sonya Chowdhury from Action for ME, who joins us; Forward ME; the ME Association; and all those affected by ME and their families, who have done so much work to bring the issue to the attention of Members in this place.
17:13:34
Andrew Gwynne
Denton and Reddish
It is always a pleasure to serve your chairmanship, Dame Siobhain. I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) on securing this important debate and on the work he not only did as Health Secretary, but continues to do as a Member of Parliament on ME, which we know is a profoundly debilitating and chronic condition that affects various systems across the body. Figures estimate that at least 250,000 people in the UK live with it. However, it is estimated that upwards of 1.3 million people live with ME or ME-like symptoms following a covid-19 infection. As we have heard, women are five times more likely to develop ME than men, and they experience more symptoms than men.
Many parallels have been drawn between ME and long covid, given that research has indicated that at least half of those living with long covid have symptoms that directly mirror those of ME. As someone who continues to suffer from the effects of long covid, those symptoms are all too familiar to me: a draining fatigue that never seems to go away; constantly disturbed sleep and an endless feeling of exhaustion; and a debilitating brain fog that can strike at the most inconvenient of moments.
I just want to place on the record that I have managed to control my long covid for the best part of two years, but this week has been a very bad week for me; I was in bed for all of today, and I have only come in to give this speech. The reason that there is a bundle of tissues here is because the sweats just hit me while walking into work. I do understand—I have lived with the experience of symptoms similar to ME—and I agree with my right hon. Friend the Member for Hayes and Harlington (John McDonnell) about the impact it has on people in work, because we do not know which days will be our good days and our bad days, and sadly we are judged against our bad days. That is true.
We need to educate employers about ME and long covid so that reasonable adjustments can be made, and about changes to the welfare system. When I was on my very worst of days, very early on after I contracted covid-19, I would have been signed off work if I had turned up for a work capability assessment, because it was obvious to all. On my best days, though, people would think, “There’s nothing wrong with him,” so if I had the misfortune of having a work capability assessment on one of my better days, I would then be put into work when I was not capable. We must attend to those issues across Government.
We know that ME costs the UK economy about £3.3 billion a year, and that number is growing. We need far better understanding of this debilitating condition and its impact on the day-to-day lives of too many people. That is why Labour is committed to putting Britain at the front of the queue for treatments by boosting clinical trial activity in the NHS. We will speed up recruitment to trials and give more people the chance to participate. We will link up clinical trial registries to create national standing registries, and harness the power of the NHS app to invite eligible participants to take part in research studies for which they are eligible. We also need to rebuild the system so that it recognises the impact of post-viral conditions like ME and equips people with the tools needed to work with it.
We need to refocus our services away from hospital settings to be rooted in the community, so that patients can access care when and where they need it, and we need to bolster a workforce that can better understand ME so that people can get timely care. Above all, we need to get that delivery plan published sooner rather than later. I implore the Minister for World ME Day: he has cross-party support, so let’s get it published ASAP.
Many parallels have been drawn between ME and long covid, given that research has indicated that at least half of those living with long covid have symptoms that directly mirror those of ME. As someone who continues to suffer from the effects of long covid, those symptoms are all too familiar to me: a draining fatigue that never seems to go away; constantly disturbed sleep and an endless feeling of exhaustion; and a debilitating brain fog that can strike at the most inconvenient of moments.
I just want to place on the record that I have managed to control my long covid for the best part of two years, but this week has been a very bad week for me; I was in bed for all of today, and I have only come in to give this speech. The reason that there is a bundle of tissues here is because the sweats just hit me while walking into work. I do understand—I have lived with the experience of symptoms similar to ME—and I agree with my right hon. Friend the Member for Hayes and Harlington (John McDonnell) about the impact it has on people in work, because we do not know which days will be our good days and our bad days, and sadly we are judged against our bad days. That is true.
We need to educate employers about ME and long covid so that reasonable adjustments can be made, and about changes to the welfare system. When I was on my very worst of days, very early on after I contracted covid-19, I would have been signed off work if I had turned up for a work capability assessment, because it was obvious to all. On my best days, though, people would think, “There’s nothing wrong with him,” so if I had the misfortune of having a work capability assessment on one of my better days, I would then be put into work when I was not capable. We must attend to those issues across Government.
We know that ME costs the UK economy about £3.3 billion a year, and that number is growing. We need far better understanding of this debilitating condition and its impact on the day-to-day lives of too many people. That is why Labour is committed to putting Britain at the front of the queue for treatments by boosting clinical trial activity in the NHS. We will speed up recruitment to trials and give more people the chance to participate. We will link up clinical trial registries to create national standing registries, and harness the power of the NHS app to invite eligible participants to take part in research studies for which they are eligible. We also need to rebuild the system so that it recognises the impact of post-viral conditions like ME and equips people with the tools needed to work with it.
We need to refocus our services away from hospital settings to be rooted in the community, so that patients can access care when and where they need it, and we need to bolster a workforce that can better understand ME so that people can get timely care. Above all, we need to get that delivery plan published sooner rather than later. I implore the Minister for World ME Day: he has cross-party support, so let’s get it published ASAP.
17:18:38
Andrew Stephenson
The Minister for Health and Secondary Care
It is a pleasure to serve under your chairmanship, Dame Siobhain. I pay tribute to my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) for bringing forward such an important debate ahead of World ME Day on 12 May. As Health Secretary, he laid the foundations for our cross-Government delivery plan, and from the Back Benches he has been a tireless champion for people living with ME. I join him in welcoming his cousin to the House today. I also pay tribute to the ME Association, Action for ME, Forward ME and many other outstanding charities that do incredible work in this area.
I thank the right hon. Members for Barking (Dame Margaret Hodge) and for Hayes and Harlington (John McDonnell), my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), my hon. Friend the Member for Devizes (Danny Kruger), the hon. Members for North Shropshire (Helen Morgan), for Putney (Fleur Anderson) and for Strangford (Jim Shannon), the SNP spokeswoman—the hon. Member for Glasgow North West (Carol Monaghan)—and the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), for their thoughtful contributions. I particularly pay tribute to the SNP spokeswoman for the work she has done on the APPG, and to the shadow Minister for coming here today despite his own health challenges.
I will do my best to address as many of the points raised as possible in the time allowed. To start, I will address one of the points made by the right hon. Member for Barking. This is very much a cross-Government piece of work. I will be working very closely particularly with the Department for Education, and others, to ensure that we get this right. It is correct that this is a Health lead, but it is right that it is a cross-Government piece of work.
ME, or chronic fatigue syndrome, is a complex medical condition with a wide array of symptoms. Some people with ME struggle to do even the most basic things that we all take for granted, such as going to the office, seeing a GP, or even taking their children to football. This debate comes at a critical time, as new studies are beginning to pinpoint parts of the brain that affect the condition. A recent report has shown the yearly cost to the UK economy could be above £3 billion. While our understanding is improving, people with ME must receive the right care and support to manage their symptoms and, where possible, to be able to move on with their lives.
Sadly, as my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) has so eloquently set out today, there has been a real lack of awareness among some medical professionals and the wider public, as also highlighted by my hon. Friend the Member for Devizes and the right hon. Member for Hayes and Harlington. For so long, people were dismissed, ignored or even told their symptoms were all in their head. However, as anyone who lives with ME knows, it is so much more than just feeling very tired; for a quarter of sufferers with severe symptoms, it is truly debilitating.
This is why our delivery plan is vital. As my right hon. Friend the Member for Bromsgrove knows, it has two core principles at its heart. First, we must know more about ME if we are able to improve outcomes. Secondly, we must trust and listen to people with ME to improve their experience. That is why the Government published the interim delivery plan last August, proposing a set of actions on research and education, but also tackling those old attitudes and adapting the language we use to describe the condition. Since then, we have consulted on the interim delivery plan to understand where the plan is strong and where we need to go further. I would like to thank the more than 3,000 people and organisations right across the United Kingdom who took part.
As we speak, officials are analysing thousands of responses and we will publish a summary shortly. These responses will be instrumental in developing the final cross-Government delivery plan, which will be published later this year. I completely understand my right hon. Friend’s frustrations, and he makes a powerful case for publishing the plan before the summer. While I cannot make that commitment at this time, I have assured him privately, and I will do so again today publicly, that I will do all in my power to ensure that the plan is published as soon as possible.
Our consultation had a huge response, which is fantastic, as we wanted the broadest range of voices to inform how we shape the plan, but the responses have also shown just how complex the challenges are. Once we have published our response to the consultation in the spring, it is vital that we go back and work very closely with patient groups to finesse the final plan, which could take some time.
As my right hon. Friend has said, people with ME have for too long been ignored and dismissed. That is why we want to take the time to properly understand the challenges they face and listen to the solutions they propose. It is so important that we get this right. I have heard my right hon. Friend, and I will continue to work hard with officials to come up with a plan that delivers for people with ME as soon as possible.
I thank the right hon. Members for Barking (Dame Margaret Hodge) and for Hayes and Harlington (John McDonnell), my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), my hon. Friend the Member for Devizes (Danny Kruger), the hon. Members for North Shropshire (Helen Morgan), for Putney (Fleur Anderson) and for Strangford (Jim Shannon), the SNP spokeswoman—the hon. Member for Glasgow North West (Carol Monaghan)—and the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), for their thoughtful contributions. I particularly pay tribute to the SNP spokeswoman for the work she has done on the APPG, and to the shadow Minister for coming here today despite his own health challenges.
I will do my best to address as many of the points raised as possible in the time allowed. To start, I will address one of the points made by the right hon. Member for Barking. This is very much a cross-Government piece of work. I will be working very closely particularly with the Department for Education, and others, to ensure that we get this right. It is correct that this is a Health lead, but it is right that it is a cross-Government piece of work.
ME, or chronic fatigue syndrome, is a complex medical condition with a wide array of symptoms. Some people with ME struggle to do even the most basic things that we all take for granted, such as going to the office, seeing a GP, or even taking their children to football. This debate comes at a critical time, as new studies are beginning to pinpoint parts of the brain that affect the condition. A recent report has shown the yearly cost to the UK economy could be above £3 billion. While our understanding is improving, people with ME must receive the right care and support to manage their symptoms and, where possible, to be able to move on with their lives.
Sadly, as my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) has so eloquently set out today, there has been a real lack of awareness among some medical professionals and the wider public, as also highlighted by my hon. Friend the Member for Devizes and the right hon. Member for Hayes and Harlington. For so long, people were dismissed, ignored or even told their symptoms were all in their head. However, as anyone who lives with ME knows, it is so much more than just feeling very tired; for a quarter of sufferers with severe symptoms, it is truly debilitating.
This is why our delivery plan is vital. As my right hon. Friend the Member for Bromsgrove knows, it has two core principles at its heart. First, we must know more about ME if we are able to improve outcomes. Secondly, we must trust and listen to people with ME to improve their experience. That is why the Government published the interim delivery plan last August, proposing a set of actions on research and education, but also tackling those old attitudes and adapting the language we use to describe the condition. Since then, we have consulted on the interim delivery plan to understand where the plan is strong and where we need to go further. I would like to thank the more than 3,000 people and organisations right across the United Kingdom who took part.
As we speak, officials are analysing thousands of responses and we will publish a summary shortly. These responses will be instrumental in developing the final cross-Government delivery plan, which will be published later this year. I completely understand my right hon. Friend’s frustrations, and he makes a powerful case for publishing the plan before the summer. While I cannot make that commitment at this time, I have assured him privately, and I will do so again today publicly, that I will do all in my power to ensure that the plan is published as soon as possible.
Our consultation had a huge response, which is fantastic, as we wanted the broadest range of voices to inform how we shape the plan, but the responses have also shown just how complex the challenges are. Once we have published our response to the consultation in the spring, it is vital that we go back and work very closely with patient groups to finesse the final plan, which could take some time.
As my right hon. Friend has said, people with ME have for too long been ignored and dismissed. That is why we want to take the time to properly understand the challenges they face and listen to the solutions they propose. It is so important that we get this right. I have heard my right hon. Friend, and I will continue to work hard with officials to come up with a plan that delivers for people with ME as soon as possible.
17:24:04
John McDonnell
It would be really helpful if the Minister could write to us about the areas that require the finessing for the eventual final plan.
17:24:32
Andrew Stephenson
I am happy to provide an update to Members. I hope that when we provide the summary of the 3,000-plus responses, it will shine a real clear light on that, but I am more than happy to write to everyone who has engaged in today’s debate to provide an update, and perhaps to address any points that I am not able to in the time allowed.
Patients can receive the care they deserve only with timely and accurate diagnosis. Sadly, there is no specific test for ME, which can be challenging to diagnose as it shares some symptoms with other conditions, as set out by the shadow Minister. That is why in 2021 the National Institute for Health and Care Excellence published the new guidelines on the management of ME that several Members mentioned. That was a step forward in helping medical professionals understand the condition so that people could be diagnosed as soon as possible. It also set out best practice for healthcare professionals in the management of ME, and the care and support they should offer patients.
Patients can receive the care they deserve only with timely and accurate diagnosis. Sadly, there is no specific test for ME, which can be challenging to diagnose as it shares some symptoms with other conditions, as set out by the shadow Minister. That is why in 2021 the National Institute for Health and Care Excellence published the new guidelines on the management of ME that several Members mentioned. That was a step forward in helping medical professionals understand the condition so that people could be diagnosed as soon as possible. It also set out best practice for healthcare professionals in the management of ME, and the care and support they should offer patients.
17:25:39
Carol Monaghan
Given that we have heard that many health trusts are not implementing the new guidelines, can the Minister or his Department undertake to write to health boards to remind them that they are in place?
17:25:47
Andrew Stephenson
I completely understand the frustration that was raised by the hon. Member for North Shropshire and others about the lack of implementation. At the moment, we and NHS England are working hard to understand the barriers to the full implementation of the guidelines. They should have been fully implemented but we acknowledge that they have not. It is so important that we get this plan over the line because the final delivery plan will, without doubt, underline the need to follow NICE guidelines. That will be underpinned by e-learning from the Department on the development of new medical professionals and other initiatives that have been taken as part of the plan. I am keen for that to be looked at. I will now turn to medical training, but I will finally say that the NICE guidelines should be followed, and we are trying to understand why that has sadly not been the case in all too many trusts.
The new guidelines, while important by themselves, must come with a broader cultural shift across the NHS. That is why we have been working with NHS England to develop an e-learning course for health professionals, which they themselves have helped to develop, alongside charities and people living with ME. The Medical Schools Council will promote the course to every medical school in the country, while encouraging schools to take students to meet patients who suffer from ME face to face to help bust some of the myths around the condition.
I want to end by saying a few words about the future. I strongly agree with my right hon. Friend the Member for Bromsgrove on the importance of research. As he knows, the Government are funding research into ME through the National Institute for Health and Care Research and the Medical Research Council. As he kindly mentioned, those institutions came together to fund DecodeME, the world’s largest genome-wide association study of the condition, which was also mentioned by the hon. Member for Putney. We are backing the study with over £3 million to analyse the samples from 25,000 people in the search for genetic differences that may indicate an underlying cause for the increased risk of developing the condition.
The study is already generating key insights. For example, while it has long been known that women are more susceptible to the condition, the DecodeME study has shown for the first time how their experience differs from that of men. I am happy to provide my right hon. Friend the Member for Romsey and Southampton North with the assurance that not only will we do everything to get the plan over the line as quickly as possible, but I will work with people such as the chief scientific adviser, Professor Lucy Chappell, to eradicate the gender bias in research.
Genomics is already revolutionising the way we diagnose and treat a range of conditions, solving riddles for diseases that were mysteries just 10 years ago. By improving understanding, investing in research and implementing our delivery plan, we will go further and faster in the years ahead. I know there is much to do. I will end by paying tribute to my right hon. Friend the Member for Bromsgrove for everything he has done on the matter. I will continue to work with him and other hon. and right hon. Members to ensure we get this right.
Question put and agreed to.
Resolved,
That this House has considered World ME Day.
The new guidelines, while important by themselves, must come with a broader cultural shift across the NHS. That is why we have been working with NHS England to develop an e-learning course for health professionals, which they themselves have helped to develop, alongside charities and people living with ME. The Medical Schools Council will promote the course to every medical school in the country, while encouraging schools to take students to meet patients who suffer from ME face to face to help bust some of the myths around the condition.
I want to end by saying a few words about the future. I strongly agree with my right hon. Friend the Member for Bromsgrove on the importance of research. As he knows, the Government are funding research into ME through the National Institute for Health and Care Research and the Medical Research Council. As he kindly mentioned, those institutions came together to fund DecodeME, the world’s largest genome-wide association study of the condition, which was also mentioned by the hon. Member for Putney. We are backing the study with over £3 million to analyse the samples from 25,000 people in the search for genetic differences that may indicate an underlying cause for the increased risk of developing the condition.
The study is already generating key insights. For example, while it has long been known that women are more susceptible to the condition, the DecodeME study has shown for the first time how their experience differs from that of men. I am happy to provide my right hon. Friend the Member for Romsey and Southampton North with the assurance that not only will we do everything to get the plan over the line as quickly as possible, but I will work with people such as the chief scientific adviser, Professor Lucy Chappell, to eradicate the gender bias in research.
Genomics is already revolutionising the way we diagnose and treat a range of conditions, solving riddles for diseases that were mysteries just 10 years ago. By improving understanding, investing in research and implementing our delivery plan, we will go further and faster in the years ahead. I know there is much to do. I will end by paying tribute to my right hon. Friend the Member for Bromsgrove for everything he has done on the matter. I will continue to work with him and other hon. and right hon. Members to ensure we get this right.
Question put and agreed to.
Resolved,
That this House has considered World ME Day.
Sitting adjourned.
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