Thursday 21 June 2018
[Mr Andrew Rosindell in the Chair]
ME: Treatment and Research
I beg to move,
That this House has considered myalgic encephalomyelitis treatment and research.
It is a pleasure to serve under your chairmanship, Mr Rosindell. I thank the Backbench Business Committee for giving Members the opportunity to hold this debate.
It is estimated that around a quarter of a million people in the UK suffer from myalgic encephalomyelitis—ME. It costs the UK around £3.3 billion per annum. Although the exact cause of the disease is unknown, numerous patients report that their ME developed following a viral infection. ME is characterised by flu-like symptoms that can vary in severity from headaches and muscle aches to debilitating pain, extreme sensitivity to light and sound, and memory and concentration problems. For some, even touch is intolerable and they require tube feeding. Despite the number of people affected and the devastating effect of the disease on sufferers and their families, it is very much a hidden illness, which is characterised by some as yuppie flu and misunderstood by doctors, the public and politicians alike.
The hon. Lady is quite right that doctors do not research this enough and do not have adequate training to suss it out, for want of a better term. More importantly, less than 1% of children are badly affected. Does she agree that, very often, employers do not understand the illness?
I agree entirely with the hon. Gentleman. It is a tragic situation when children are not able to attend school and social services become involved because they consider there to be a problem with those children’s care.
It is particularly difficult for those who attend benefits assessments on a day when the symptoms are not as bad, because there is no acceptance that the illness can be very bad on some days, but not quite as bad on other days. Does she agree the benefits system must look at the longer term picture, rather than the short term?
I will come on to interactions with the Department for Work and Pensions. ME patients report that energy levels vary. Sometimes, going to such an appointment can wipe out someone for many weeks afterwards. If that person were to attend the appointment the following day, their condition would be very different.
I am delighted that the hon. Lady has secured this debate. She referred to the seriousness of ME and how many people are affected. Does she agree that for it to be taken seriously and proportionately to its scale and impact, that needs to be reflected in every area, including the amount of medical research that is devoted to ME? It is certainly a point that my constituents are concerned should be raised in this debate.
ME receives practically no biomedical research funding, which I will come back to. Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.
Merryn Crofts was just 15 when she experienced hives and swelling in her joints after a family holiday in Majorca. Tests revealed that she had contracted glandular fever.
Despite dozens of medical appointments, Merryn’s condition deteriorated; she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016. Merryn wrote in her blog:
“Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”
Merryn died on 23 May 2017, just days after her 21st birthday.
Why is the treatment for people with ME so poor? The lack of understanding shown by some healthcare professionals of a person’s suffering is one of the greatest frustrations to the ME community. Much of that stemmed from the publication of the controversial PACE trial. The treatments investigated in the PACE trial were based on the hypothesis that ME patients harbour “unhelpful” convictions about having a disease and that the continuation of their symptoms is the result of deconditioning.
The PACE trial compared different treatments, including cognitive behaviour therapy—CBT—and graded exercise therapy, or GET. The results that were published in The Lancet in 2011 seemed to show that GET and CBT could bring about some improvements in a person with ME. Although that may seem positive, if we dig a little deeper we discover that the parameters for recovery were changed midway through the trail and the results depended on self-reporting. Patients have told me that they were pressurised to describe improvements they really did not feel. One participant in the original trial said:
“After repeatedly being asked how severe...my symptoms were. ..I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”
The hon. Lady is making a powerful speech and is drawing attention to this much misunderstood but very serious condition. My constituents will be grateful to her for that. She made some powerful comments on the PACE trial; will she comment on the way that NICE guidelines have an impact on how the condition is viewed?
I will come on to the NICE guidelines. They are under review, and all politicians can help with that. I have already written to NICE about the issue and I will ask the Minister about that later.
We now know that 13% of the participants in the PACE trial qualified at baseline as “recovered” or “within the normal range” for one of the study’s two primary measures—self-reported physical function—even though they were classified on the same measure as disabled enough to enter the study. That anomaly, which occurred because the investigators weakened key outcome thresholds after data collection, invalidates any claim that patients recovered or got back to normal. The overlap in entry and outcome criteria is only one of the trial’s unacceptable features.
For patients, the impact of PACE is severe. The recommendation of GET as a treatment for ME has provoked a backlash from patient groups, who report that many people with ME end up more severely disabled after a course of GET than before. I have spoken to people living with ME who have tried to do GET because they are so desperate to get better and have ended up in a wheelchair or bed-bound as a result of this programme.
I congratulate my hon. Friend on securing the debate. The turnout shows the significance of this issue to all our constituents. Her point about GET is important. It seems perverse that people should be forced to take a course of treatment that patently makes their condition worse. Does she agree that that must be reviewed?
Indeed. Many people have written to me about their experience of GET, but some of the most upsetting examples are of children who were forced through a programme of GET and ended up with life-changing disabilities as a result.
I am grateful to the hon. Lady for mentioning my constituent, Merryn Crofts, whom I will speak about later. Merryn’s mum, Clare, said to me that Merryn was put on GET and that it made her condition worse. Everything that the hon. Lady says is backed up by the testimony that Clare gave me—I just wanted to share that with her.
I thank the hon. Lady for her intervention. Merryn’s is not an isolated case, and neither are those of my constituents—I am sure that Members present have all heard constituents describe the same situation.
The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions. Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work. PACE is unique in UK medical history, in that it was part-funded by the DWP. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:
“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”
I will leave hon. Members to make up their own minds about that.
Healthcare professionals worldwide are starting to take note. The US Centres for Disease Control and Prevention and the Health Council of the Netherlands have both abandoned GET. If those countries acknowledge the flaws of GET, why are ME sufferers in the UK having to fight so hard for similar acknowledgement? The ME community hopes that GET will not feature in the NICE guidelines for ME treatment after they are revised.
Some argue that CBT is provided as a treatment for many illnesses, including heart disease and cancer, and that ME patients’ rejection of it is irrational. The key difference is that cancer patients receive biomedical treatment in addition to CBT, rather than having CBT to the exclusion of biomedical interventions. Biomedical treatment for ME is woefully lacking. There are reports from the US that certain antiviral drugs improve the condition, but without properly funded research to identify biomarkers for ME, we do not have the answers.
Diagnosis is currently based on a patient presenting with known symptoms. Although there is no biomarker for ME, that does not mean there is no biomedical test for it. The two-day cardiopulmonary exercise test, which can objectively document the effects of exercise, could be used as a diagnostic tool. In simple terms, people with ME perform adequately or even well on the first day but have reduced heart and lung function on the second. That relates to the point made by the hon. Member for Alyn and Deeside (Mark Tami) about the DWP and the fact that someone’s presentation may be good one day but not the next.
That protocol involves two identical tests separated by 24 hours, the collection of gas exchange data and the use of an exercise bike to measure work output accurately. That type of testing reveals a significant performance decrease on day two among people with ME, in terms of their workload and the volume of oxygen they consume before and during exercise. Results from a single test may be interpreted as deconditioning, which may lead to harmful exercise being prescribed. However, the objective measurements of the two-day test remove the issues of self-reporting bias and the question of effort—in other words, the results cannot be faked.
Those results support the strong and consistent patient evidence of the harm that can occur as a result of inappropriate exercise programmes. However, there are moves afoot to categorise ME as a psychological condition. NHS guidelines on medically unexplained symptoms class ME as such a condition. The Royal College of Psychiatrists states:
“Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’”
I just want to pick up on the hon. Lady’s point about ME being classified as a psychological condition. Does she agree that that is a little curious, given that the World Health Organisation states in its “International Classification of Diseases” that ME is a neurological condition? My understanding is that the United Kingdom is legally obliged to follow that classification.
I thank the hon. Gentleman for his intervention. Worryingly, the WHO is looking at reclassifying ME, too—we should all be aware of that—and its current classification of ME as a neurological condition has been ignored in terms of the treatment we have offered to patients here in the UK.
The Royal College of Psychiatrists goes on to state that symptoms are
“not due to a physical illness in the body. However, they can be explained, but to do this, we need to think about causes that are not just physical.”
Under the new “Improving Access to Psychological Therapies” guidance for people with long-term conditions, patients who present with ME are classified as people with medically unexplained symptoms who should undergo CBT therapy, in conjunction with other treatments—in other words, graded exercise therapy. However, as ME is classified as a psychological condition, patients risk getting trapped in the psychological care pathway.
I am co-chair of the all-party group on Lyme disease. Does the hon. Lady agree that there are many similarities between Lyme disease and ME, in that patients may be misdiagnosed and may not know where to turn, and that we need to invest in research in both those important areas?
There are many conditions that we now think could be grouped under the wide umbrella of auto-immune conditions. Lyme disease, multiple sclerosis, rheumatoid arthritis and ME may all be in that group, but without research we do not know.
Some people consider ME to be a psychological condition, despite the fact that people with ME are not allowed to be blood or organ donors. Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition. I wonder what they have to fear from proper biomedical research into ME. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on ME treatment and care, as medical professionals they should surely support that.
I congratulate the hon. Lady on securing the debate. Is she aware that the UK charity Invest in ME Research recently opened a centre of excellence for ME research at Norwich research park? That was funded by patients and carers, who raised a staggering £800,000 for what will be groundbreaking, world-class research.
I was not aware of that specific centre, but I am aware that almost all the biomedical research currently taking place in the UK is funded by charities and patient groups, rather than by the Government or research councils.
Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP”. I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?
The hon. Lady is making an exceptionally good point about this whole challenge, and the number of Members in the Chamber is testimony to her leading an exceptional debate. Many of my constituents have written to me about this issue. Is the thrust not that the ME community needs to be listened to more broadly in NICE’s review?
NICE has said that it will review its guidelines and talk to patient groups and ME charities in doing that. We must continue to urge it to ensure that that is the case, because those best placed to talk about the impact of the current guidelines and what should be in future guidelines are those living with ME.
Should not graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed, given the evidence that people are being harmed by it? The Minister is hearing that evidence today. Is there not a possibility that in future a court could compensate ME sufferers if they continue to be prescribed GET, given that we, the Minister and medical professionals know the evidence?
One of the big issues we have is the real lack of awareness among many in the healthcare profession. I do not want to criticise people in healthcare, and in particular GPs, who have to cover many different conditions, but that highlights why GP education and ME awareness must be increased. It is not an uncommon condition, so we really need to look at that.
What do we need to do now? First, we need properly funded biomedical research into the causes of ME and the treatment of those with ME. I recently asked a series of written questions about the level of funding into biomedical research, and frankly the answers did not fill me with confidence. Less than £1 is spent annually on each ME patient in the UK. It gets worse, because the response states that that was not solely Government funding but, as has been mentioned, from a combination of funders including many ME charities. The Scottish Government have just announced £90,000 for a PhD studentship to support research into the causes, diagnosis and treatment of ME. It would be most welcome for people across the UK if the UK Government were to follow that lead.
I am pleased that NICE is reviewing its guidelines, but, as was just said, GPs are still recommending exercise as a treatment. I ask the Minister: how is the Department of Health and Social Care supporting training for medical practitioners on ME care and treatment? The new NICE guidelines will not be published until 2020, so what representations will he make to NICE to ensure that damaging exercise therapy does not remain the main course of treatment?
In the debate on ME in February, I asked the Minister for Care, the hon. Member for Gosport (Caroline Dinenage), about working with her colleagues in the Department for Work and Pensions to ensure that new guidelines are drawn up for dealing with people with ME. What progress has been made on that? Most importantly, will the Minister support proper funding for biomedical research into the diagnosis and treatment of ME? I understand that money is not usually ring-fenced for particular conditions, but, considering how poorly funded biomedical ME research has been up to now, what steps will the Government take to address that?
I thank all hon. Members who have delayed returning to their constituencies to speak up for those with ME. Their support is appreciated and welcomed by those here today, and by the wider ME community. I also thank the ME charities and campaigners who have briefed us all so thoroughly, and the Countess of Mar for her relentless campaign for improved treatments for ME.
ME is a condition that it is all too easy for us to ignore. Those afflicted by it are often unseen by society, but many hon. Members are in the Chamber because they have been approached by affected constituents. I thank all of those who have brought the condition to our attention. ME has a devastating impact not just on its 250,000 sufferers but on families and carers, too—it has a far wider impact. Ultimately, as politicians we must remember that statistics are simply patients with the tears wiped away.
I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing the debate and all hon. Members who will participate in it. It is essential that we speak for the millions missing, and it is great to see so many people in the Public Gallery.
What I find so shocking is that scientists seem not to want to have the debate. I hope that right hon. and hon. Members across the House find it shocking that the hon. Member for Glasgow North West was written to by a scientist and called out. I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate.
It is great that the NICE guidelines are to be reviewed, but my concern is that that will take some time. I am sure that is the right process; we must get it right and ensure that the voices of ME sufferers are heard. Scoping working groups have been set up in which ME sufferers have been able to participate, and that is welcome. But I find it quite scary that the current guidelines will be in place until October 2020. I have listened to my constituents and read about those of other right hon. and hon. Members who feel that if they are prescribed according to those guidelines and go through all that, it makes them more ill. Far from helping them, it makes them deteriorate. Indeed, I have a constituent who feels that the programme she was put through set her back two or three years.
Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a scientist, but from what I have read, that experience is widely shared—it is up to the Minister, working with the chief medical officer and others, to question whether the NICE guidelines should be suspended, at least with respect to GET. If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation.
No one wants that. To avoid it, surely there must be a way in which Government Ministers, working with NICE and the CMO, can issue guidelines directly to GPs and medical professionals to say, “Be careful before you prescribe GET. Ensure that you have read the evidence. Ensure that you have talked properly to the patient.” With many drugs and pharmaceuticals, there are sometimes side effects. Therapy does not work for everybody. Where is the warning in the NICE guidelines of the side effects of GET? That is serious, because people could be seriously hurt in the period between now and the conclusion of the NICE review.
I will move on to research. Looking at the work that Invest in ME Research has done, for example, setting out the calls for research in this country over two decades or more, I find it quite disturbing that those calls have been ignored. Only charities have enabled a meagre amount of research to be done. Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward.
Does the right hon. Gentleman share my concern that, as I understand it, there are roughly two and a half times more people with ME than with multiple sclerosis, yet there is 20 times more research on multiple sclerosis than on ME and, of what little ME research there has been, the vast majority has been through psychological and behavioural studies rather than the biomedical approach?
I share the hon. Gentleman’s concern. I should say that we still need a lot of research into MS, so it is not one or the other, but given the incidence of ME, as he rightly says, the case for research into the biomedical aspects is strong. Invest in ME Research makes a number of proposals in its recent report. For example, it proposes a ring-fenced fund of £20 million a year for the next five years for biomedical research. That recommendation comes from a detailed report; it is not just plucked out of the air. That sort of figure would show that the Government mean business.
I am aware that Ministers cannot stand up at the Dispatch Box and say, “Yes, of course we will direct research money into this probe; I myself will do it.” I am not suggesting the Minister can do that today. I know he cannot. He has to work with research councils and others to direct the research. I am also aware that if researchers do not make proposals, sometimes research moneys cannot be granted.
As I mentioned earlier, Invest in ME Research has set up a centre of excellence for research in the Norwich Research Park, and it is planning to create a hub for European biomedical research, which is good news indeed. It already has five PhD students and is hoping to push out a consultant-led clinical service. Here we have the infrastructure and base for that extra Government funding, to build on the money that has been raised by patients and carers.
The hon. Gentleman is absolutely right, and it is good that he is here to champion that centre. He makes the point I wish to make to the Minister: a pipeline of research proposals is likely to come about not only from the centre in Norwich, but no doubt as offshoots from research elsewhere—particularly the United States, which is beginning to get its act together on the research side. There is a pipeline, and I urge the Minister to anticipate that, to talk to the research councils and to say with his colleagues, “We will be ready and we will have the funds ready so that when the research proposals come through”—as I am confident they will—“we will back them.” Then we can start making progress. I say to the Minister, please, not to wait to see whether they come through before he dedicates the money and starts pressurising the research councils, because we know that process can take too long. People have already waited too long.
I will conclude my remarks by underlining two points touched on by the hon. Member for Glasgow North West. The first is the need for respect for patients. Sometimes it seems, from the stories I have read, that some in the medical profession—I say some—do not appear to respect patients. They make comments that it is all in people’s minds and that they are making it up. That is no way to talk to adults. A constituent of mine who has been suffering from ME, who I talked to last night, recently went to see her consultant. The consultant said in terms, “All ME people are crazy, except you.” That did not make her feel very happy. I am afraid that type of view among senior medical people is not acceptable, and I hope Ministers will make it clear that they expect patients not to be treated like that.
That links to my final point, on the need to train doctors. We need better guidance and better training so they understand that situation. In that light, I am worried that we are seeing some pressure to reclassify ME. That is sending a dangerous signal, and I hope the Minister will say that the Government are questioning that reclassification and putting it on hold. Otherwise, the training for doctors will not happen, the respect for patients will not happen and we will not see the change that our constituents demand. I look forward to the Minister’s remarks and to the contributions of other hon. Members.
As a lot of colleagues wish to speak in the debate, I ask that everyone keep their remarks within about eight or 10 minutes each, if that is possible. For the benefit of the Minister and the Opposition spokesmen, I hope to be able to start the winding-up speeches at 4 o’clock.
It is a great pleasure to serve under your chairmanship, Mr Rosindell, and to contribute so early in this debate. I too congratulate the hon. Member for Glasgow North West (Carol Monaghan). The hon. Member for Glasgow North (Patrick Grady) and my hon. Friend the Member for North Cornwall (Scott Mann) were right to say that the number of hon. Members here in this Chamber shows the importance of this subject; I pay full tribute to the hon. Member for Glasgow North West for bringing this debate.
I am particularly pleased to contribute to this debate as a patron of the Dorset ME Support Group, to set out some of the work the group does and to give a brief insight into the lives of two ME sufferers in my constituency. Dorset ME Support Group’s chairman, Peter Bennett, has been hugely helpful in setting out the challenges that ME sufferers face in Dorset. Much of the knowledge the group has comes from the work done in our community in Dorset. There are nearly 400 members, not just in my constituency, but spread across the whole county, and the group provides practical support to its members and their friends and families.
I will highlight three ways that that practical support is given. First, there are local link groups, offering informal venues for members to meet and socialise. Secondly, there is an annual medical lecture. Thirdly, there is telephone support and personal one-to-one support from a self-care co-ordinator. The group’s activity is quite a feat, given that the charity was set up in 1983 and relies on only two part-time employees, as well as a number of volunteers. Needless to say, more volunteers and trustees would be welcome, so if any residents of Dorset are following our proceedings and would like to get involved, I invite them to get in touch. I am sure the Minister and all hon. Members in the Chamber would wish to join me in congratulating Dorset ME Support Group and Peter, as well as the many other support groups that exist across the country.
I will briefly highlight two constituents’ stories about their journey with ME and how it has affected them and the people around them. The first comes from Megan, who is still at school and has detailed to me the impact of ME on her education and quality of life. The following extract sets out the huge challenges she faces daily as a young person with ME, and it speaks to the lack of independence or control over their lives that some sufferers face. She says:
“I suffer with ME and it has a huge impact on my education. My grades have dropped far below where they should be and I am just not very happy at school in general. As a result of my ME I suffer with low mood and some anxiety more recently. I have had ME for about 18 months now.”
Megan encouraged me to attend the debate, saying
“it would educate you so much on the struggles me and many others face in everyday life.”
I thank her very much for that encouragement and for taking the time to travel to London today to witness our proceedings this afternoon.
One specific point I would like the Minister to consider is the raising of awareness of support groups—not just in Dorset but across the whole country. Megan made the very good point that the Dorset ME Support Group was not recommended to her or her family by any medical professional; they had to search it out for themselves. She says of that group:
“I know that we are lucky in this area to have that, but it’s something that I really think should be available to everyone.”
I agree. Will the Minister consider what formal mechanism might be put in place to ensure that sufferers and their families are informed about such national and local groups?
As the hon. Member for Glasgow North West said, ME not only affects the sufferer but has a wide-ranging impact on families, partners and friends. Another constituent of mine, who is a family member of a long-term ME sufferer, says:
“As my daughter suffered from this debilitating condition for many years, I have personal experience of the devastation it can cause. It came close to costing both of us our careers and certainly changed the course of her life.”
Those brief snapshots, along with the other accounts we have heard and those we will doubtless hear in due course, remind us that this condition takes its toll on the quality of life of everyone that it comes into contact with—not just the 250,000 sufferers who live with it day in, day out.
My final point is obvious and has already been made, and it is about the importance of research. While there is currently no cure for ME, there are treatments that can help to ease symptoms, although no one form of treatment may suit every patient. I am pleased that the Medical Research Council and the National Institute for Health Research welcome high-quality applications for research into all aspects of ME, and I am told that £2 million has been invested in ME research as a result. However, as has already been said, that is a very modest amount indeed. More research into effective treatments is necessary, so that ME sufferers in my constituency and across the country can live as normal a life as possible.
I am delighted to take part in this important debate. I thank the hon. Member for Glasgow North West (Carol Monaghan) for introducing it and all other hon. Members who supported the application for a three-hour debate; we will certainly need it with the number of hon. Members who wish to speak.
I owe my knowledge of ME to friends who have suffered from it and, particularly, to constituents who have written poignant letters to me about their experiences and the hurt they have suffered when people just would not recognise that they had a condition—whether we call it ME, chronic fatigue syndrome or a post-viral condition. All those different elements make ME a problematic condition.
I mainly want to thank my constituent and friend, Dr Charles Shepherd, who is in the Gallery and to whom I mainly owe the few words I will say. He has advised the ME Association for many years now. Along with Dr Chaudhuri, he has written a book on ME. Hon. Members might like to go through it if they have a few moments; I went through it again last night. They will be staggered by some of the things that they did not know. However, I have to say that it is not the easiest read. It is very technical and very medical, but this is an incredibly technical and medical disease, which is why we do not know enough about it.
I will try to avoid the points made by other Members, but I make no apologies for going through some of the points made to me by Dr Shepherd. I also mention Sarah Reed—the wife of Andy Reed, the former Member for Loughborough—who has for a long period of time also suffered from ME and has been in touch with me about it on many occasions.
On medical education, it is quite clear that GPs, in particular, have no experience in how to diagnose this disease, so there is a need for training at both undergraduate and postgraduate level to make sure that doctors become more aware of what the condition looks like and the ways in which they could begin to treat it. That continuing lack of medical education adds to the misery that our constituents have faced. Dare I say it, it behoves the Minister—I know he will be tied in what he can say—to say something about the training programmes that we should expect our doctors to go through. It is vital that ME is understood not only by junior doctors but all the way up through the profession. We have understood, from some of the arguments on research, that there are still those who are not necessarily as keenly aware of ME.
Does the hon. Gentleman agree that this is about awareness not only among doctors but among teachers, employers and the wider community? The lack of knowledge in those sectors exacerbates the conditions that those with ME suffer from, and that causes great distress.
I agree, and the hon. Lady makes her point strongly. All I will say is that I will concentrate mainly on the medical side of things. However, everybody needs to be more aware because of the numbers—two in every 1,000 people are thought to suffer from the condition.
We have heard a lot about the PACE trial and the need for NICE to rewrite its guidelines, so I do not really want to labour those points, other than to say that it is not helpful that cognitive behavioural therapy and graded exercise therapy are still suggested as the appropriate way forward after ME diagnosis. We know for all sorts of reasons that that is not so. I am sure the Minister heard that and will want to comment on it.
My constituent was diagnosed with ME but, after going for a private test, it turned out to be Lyme disease. That shows the lack of knowledge and the confusion in the medical profession between those two conditions and others.
If my hon. Friend reads Dr Shepherd’s book, he will see some of the overlap between Lyme disease and ME, as the hon. Member for Glasgow North West mentioned. That is why this whole area needs proper diagnosis and a proper investigation into some of the research implications.
On research, as has been made patently clear by other Members, most of the research is self-help. That is not good enough. This is a major condition that affects lots of our constituents, and yet they are asked to raise all the money for research themselves. That is not good enough, so we clearly ask the Government—as the Minister will have heard—and the research councils to give ME the priority that it deserves.
I hope the hon. Gentleman will support my campaign to get the Government to invest in the Invest in ME Research centre of excellence in Norwich. I did not mention that it has a really good chance of forging first-class links with not only European biomedical research institutes but institutes in the United States and Asia, where other groundbreaking research is being done. The Government should support and invest in success.
I think that was aimed more at the Minister than me, but I totally agree with the hon. Gentleman. I gather that the National Institutes of Health in America has begun to grapple with this and to put some quite serious funding into it. ME is an international condition, so we should hope that the Medical Research Council is also able to provide that level of support.
We have heard about the impact of ME on people who go for benefits interviews with the Department for Work and Pensions. As the hon. Member for Glasgow North West mentioned, it is difficult to get those who judge people’s conditions to understand how variable ME is. When people are going for employment and support allowance, personal independence payment or, as has been the case more recently, universal credit, account needs to be taken, when practitioners are making decisions, of the fact that the condition is variable. Sadly, all the evidence is that that is not fully understood. Again, this matter is not the Minister’s responsibility, because it overlaps with the remit of the DWP, but I hope that he can take away from what has been said here today the fact that the DWP needs to be much more aware of what the condition entails, rather than making judgments on what they see the person performing in front of them.
I think that the most important point of all is that we all could put pressure on our local clinical commissioning groups to show greater recognition of how important it is that they fund ME, in terms of both support for the individual patient and looking at how they commission the moneys that go into the services. Clearly, this remains a Cinderella subject, but given the numbers affected and the misery suffered by people with the condition, that is not in any way acceptable, so I hope that as a result of today—again, the Minister will hear this—we might all be able to go out and talk to our CCGs about what evidence they can provide us with to show that they are properly funding treatment of this condition. As we all know, what has happened in the past has been totally unacceptable. Let us hope that there is a better world now and that we can all play our part in ensuring that this condition is treated with the seriousness that it deserves.
It is a great pleasure to serve under your chairmanship, Mr Rosindell. Like other hon. Members, I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan), who has shown great stamina in fighting for this cause and who set out the position at the outset of the debate with great detail and authority. I therefore do not want to repeat what she said, but will just make a few points.
I said in the application for the debate that the reason why I thought we needed to have it was that ME has terrible PR. That was a slightly flippant thing to say, but the real point I wanted to make was that it is a forgotten illness—and I think it is forgotten for two reasons. The first is that the symptoms are relatively intangible, and the second is that the condition has been disparagingly referred to in the past by a name that has stuck. The hon. Lady referred to it—yuppie flu. It is important that we debate this condition today, not because there are not other illnesses out there—of course there are—but because the sufferers, some of whom we see in the Public Gallery, have been voiceless too long and it is for Parliament to give them their voice.
I want to take this opportunity to thank three remarkable ladies in my constituency: Louise Beaton, Linda Hending and Rachel Ephgrave. With their courage, dignity and stamina, they have educated me and given me the opportunity to speak on their behalf. With that opportunity, let me begin by slaying some myths. The first myth is that of yuppie flu. ME is a thing. The US Institute of Medicine published in 2015 a report that analysed more than 9,000 scientific articles about ME. What did it conclude? It stated:
“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease”.
In addition, as we have heard, the World Health Organisation has categorised it as a neurological condition in paragraph G93.3. Let the message go out today to those people who may have a dim awareness of ME that it is a condition; it is recognised as a condition; and it deserves to be treated as a condition.
The hon. Member for Glasgow North West has already referred to the impacts of the condition. I will not repeat those points, other than to note this. When we talk about its affecting an estimated 250,000 adults and children in the UK, that is important because it allows us to put it in context with other conditions and the way they are treated. For example, there are 11,000 or so new cases of brain tumours each year, according to Cancer Research UK. The late and much missed Baroness Tessa Jowell did a brilliant job of encouraging the Government to fund additional research into brain cancer, and none of us, least of all anyone in the Public Gallery, would begrudge that a penny, but £40-odd million has gone into that and it is right to note that the number of ME sufferers in the UK is considerably more than 11,000.
I also want to slay the myth about the kinds of people who suffer from this condition. I happen to know from my own constituency that the people we are talking about include former GCHQ workers, lawyers and teachers. It is heartbreaking to see lives curtailed and potential going to waste.
The symptoms of ME have already been referred to, but they bear emphasis. They include post-exertional malaise, muscle and joint pain, cognitive difficulties, noise and light sensitivities and digestive problems. We know all that, but there is one additional point that I want to mention. Although ME patients, contrary to another myth, are no more likely to suffer from poor mental health or emotional problems than the general population, adults with ME are six times more likely to die by suicide—six times more likely. When one considers the impact of the issues referred to very expertly by the hon. Lady—noise and light sensitivities and so on—one might be forgiven for saying, “Well, it’s not that serious, is it?” But the cumulative effect is so oppressive that it can lead people to take their own lives.
In the time left to me, I want to underscore two points. First, on welfare benefits, the overwhelming majority of respondents to an Action for ME survey on the issue felt that assessors had insufficient expertise. We of course understand that assessors cannot be expected to be experts in every single condition, but they do need to understand in respect of ME that the way someone presents on a particular day could give an entirely misleading picture of their condition. Why? Because the sheer effort of going to present themselves on that occasion can have long-term implications, and also the effects can be cumulative. People have good days and bad days, but that variability is not currently taken into account sufficiently and it must be.
That brings me to the second point. The issue about the NICE guidelines has been very well traversed by other hon. Members and I will not say anything further, other than to add this. Clinicians and experts will say, “Follow the evidence,” and of course they are right. Most of us in this Chamber believe in experts; we value experts and expert evidence, but patient experience is also evidence. It is quite wrong to put it in a category of material that can somehow be overlooked or, indeed, disparaged. It seems to me that there is an overwhelming body of material that suggests that the 2007 guidelines, which happily are now being reviewed, have to be seen in the context of a large body of evidence from patients that suggests that they are not working as they should. Patient evidence is evidence—that is the key point.
My final point is in respect of research. In the United States, a huge amount of research is taking place. There will be those who say, “Look, public money is extremely precious; public resources are precious.” That is absolutely right, but we know from the United States that research is having an impact. Work in the United States has led to new insights into the metabolic, immunological and neurological abnormalities of ME. Although the Department of Health and Social Care has repeatedly cited a lack of high-quality research proposals for the lack of investment, I hope that it will be able to take into account what is coming from the United States to give it some encouragement that there is scope for real advances. I underscore the point that £40 million is going into brain cancer research following the wonderful advocacy of Tessa Jowell; that places the lack of investment going into ME research in rather sharp focus.
I conclude by paying tribute to the silent sufferers of this cruel disease in our country. Let the word go out from the House of Commons: they shall be silent no longer.
It is a pleasure to speak in this debate. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on advancing a comprehensive and compassionate case on behalf of ME sufferers and I congratulate her on encapsulating the issues so well. Her constituents will be very proud of her; she can be assured of that.
As someone who has had the opportunity to speak on behalf of ME sufferers over the years, before I came here in 2010, one frustration of my former life as a councillor and as a Member of the Northern Ireland Assembly was that if I put “ME” on a disability living allowance form, as it was then, that I was filling in for a constituent, and went to the GP and said, “I need a wee letter to support this person who has ME”, they would say, “They have what?”, and I would have to explain. That is in the past now, thank goodness, and I can honestly say that in the past few years there has been a better understanding from GPs and doctors in my constituency. They have come round from not understanding ME to understanding it, so when someone needs a form to be filled in, it is filled in right; if they need a support letter, that happens too. That is very important.
It was my pleasure to support the hon. Member for Glasgow North West at the Backbench Business Committee, so I wanted to make a contribution today.
I should have paid tribute to all hon. Members who supported my application for the debate, and who came along to make representations to the Backbench Business Committee, like the hon. Gentleman. I see several of them present, and I thank them.
We are always very pleased to support the hon. Lady’s proposals to the Backbench Business Committee.
This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.
We are fortunate to have a Minister who has a deep interest in this subject matter. He is in deep conversation with his Parliamentary Private Secretary, the hon. Member for South Suffolk (James Cartlidge), at the moment, but I am sure he will turn round shortly and be aware of my contribution. I am sure that he will respond constructively.
I want to thank MEAction, Action for ME, the ME Association, the ME Trust, Blue Ribbon for the Awareness of ME, Centre for Welfare Reform, Forward-ME, ME Research UK, the Welsh Association of ME and CFS Support and Hope 4 ME Fibro NI in particular. All those organisations—there are lots of them—have furnished us with lots of information, and I thank them. I particularly thank one constituent, Sally Burch, who ensured that I had all the details and information to help me. She comes to see me regularly and fills me in on all the details.
ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.
The hon. Gentleman is right to raise the issue of children with ME. It has an impact on their education because of the lack of access to consistently available home education where that is necessary. Does he agree that the Minister may want to take that up with his colleagues in the Department for Education?
I thank the hon. Lady for her intervention, which gives me a chance to say that I have constituents who have had to be home-schooled for the simple reason that they have ME. I am aware that the illness affects not just adults, but children, and I have seen the effect on their education as well.
Very few of the hospital-based ME services provide a domiciliary service for people who are unable to attend an out-patient department. There is now only one hospital service that has dedicated in-patient beds for the assessment and management of people who require hospital admission to a ward where staff have experience in dealing with the condition.
Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. We have a non-functioning Assembly, as many hon. Members will know, which means that trying to initiate something is even more difficult now than in the past. The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.
The briefing I received provided so much information that it would be impossible to go into all the details in the short time that I have available, and I will not try to do that, but I will highlight the problem of the 2007 PACE trial that my constituents raised with me. In 2007, NICE recommended graded exercise therapy and cognitive behavioural therapy for patients with ME. That guideline was based on weak evidence from small trials, so the much larger PACE trial was designed as a definitive test of such therapies. It cost some £5 million and was funded mostly by the Medical Research Council, with, uniquely, some funding from the Department for Work and Pensions. PACE researchers reported that with cognitive behavioural therapy and graded exercise therapy approximately 60% of patients improved and 22% recovered. The treatments were claimed to be moderately effective and safe.
However, PACE’s claims ran counter to patients’ knowledge and lived experience. My constituents told me that that was not how it really was. That led some to examine the trial’s methods, and they found two considerable problems. First, the objective results were poor. After a year of therapy, the graded exercise therapy group’s increase in walking speed was less than half that achieved in three weeks by a sample of class II chronic heart failure patients receiving graded exercise. The trials were suspect before we even got the information.
Secondly, after the trial had finished, the PACE authors lowered the threshold they used as the definition of improvement—it was as if they had taken the figures and manipulated them to get what they wanted. That inflated the number of participants who were classed as recovered or improved. In some cases, even patients whose condition had deteriorated during the trial were classed as recovered. I believe in miracles—I know they happen—but that was not one of them, because people had not recovered.
After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results.
All that was highlighted to me during a constituency meeting with Sally Burch and other ME sufferers, including a wonderfully intelligent constituent of mine who had noted the questions that I had asked at Westminster and the letters that I had written to the Minister about the trial. She explained her day-to-day life. I knew her day-to-day life as a healthy person, so now that she was not, I could clearly see the difference. She said that her treatment and care are not acceptable.
Hope 4 ME Fibro NI, of which many of my constituents are members, underlined its opinion on the need for ME inclusion in the medical curriculum after the charity hosted an ME educational event on 24 May at Queen’s University Belfast, which nearly 400 medical students attended, as did many lecturers. They all have the same interest in ME: how we go forward, what the PACE trial did and whether it helps us. If it does not help us, let us highlight that. The results of the charity’s questionnaire are revealing and clearly demonstrate the desperate need for ME to be included in the medical curriculum. Other hon. Members have spoken and will speak about the need for research. We are looking for many answers, as always, but if there was one particular issue that we were looking for help with, it would be the research. Perhaps the Minister will give us the encouragement that we need in his response.
ME is a serious illness, which seriously affects so many in our communities. These people are not lazy and they must not be made to feel like that. To say to an ME sufferer, “Get up and have a walk. You will be fine,” is tantamount to saying to someone with a bullet in his leg, “Stick a plaster on it, ignore the blood flowing down and soldier on.” We must send the message that that does not work and is not helpful. We in this place must ensure that diagnosis and care are appropriate, which is not the current situation, so I fully support the calls of the hon. Member for Glasgow North West.
On behalf of my constituents, and all constituents across the United Kingdom of Great Britain and Northern Ireland, I am asking not simply for words of understanding from the Minister, but for action to be taken to change the “Get up and get on with it” mentality to an “I will help you to get up and get on with it, and find a way to facilitate an easier way of living your life” mentality.
In this debate, we want to highlight ME and show what the problems are. We look to the Minister for action; we need his help to make it happen. We need something practical that can and will help, and that will give encouragement to our constituents and to all ME sufferers across this great nation of the United Kingdom of Great Britain and Northern Ireland.
Thank you, Mr Rosindell, for calling me to speak.
I am here to speak today partly because constituents have been in touch to ask me to do so, but also because I have a very good friend who has been affected by myalgic encephalomyelitis, or ME, since about the age of 15 and she is in her early forties now. When I say “affected by” ME, that means that she did not go on to college and she has never held a job. She is not at the worst end of the spectrum of severity, but I think I can probably best describe her condition as just almost constantly feeling rough. So, it is like either having flu or migraines, or aches and pains.
I am aware of my friend’s condition. Obviously, it is one thing to read up on the condition or to hear accounts from constituents who come to see me, and I have had constituents with ME and fibromyalgia, which is a similar condition, come and talk to me. However, when someone has a very close friend with ME, they know that every time they try to make a social engagement with them, it will always be, “Well, Lucy will come if she’s up to it that day.” My friends and I are all planning to watch the football together on Sunday. However, we will not know until Sunday morning whether Lucy is well enough to attend, and half the time that she does come along to events, it is possible to tell that she is struggling with a migraine or flu, but she just desperately wants to see her friends. That really brings home just how debilitating a condition ME is.
As the hon. Member for Cheltenham (Alex Chalk) said, there is a cumulative effect with ME. People make such a big deal of having a cold, or just feeling a bit under the weather, or feeling hungover. Lucy feels like that most of the time and obviously there are other people with ME who are completely bedridden or who cannot bear bright lights. I had a member of staff whose younger brother came to her wedding in a wheelchair, because he had ME. So it affects people in many ways.
However, in some ways the cruellest impact of ME is the fact that sufferers are not believed and that it is a hidden illness, so to speak. The ME campaign group, Millions Missing, recently held an event in Bristol, where friends and relatives of those with ME laid out pairs of shoes to represent some of those who are suffering from the illness, which effectively renders them invisible, and they also read out stories of the battles that their friends and family members had gone through, as well as expressing their determination to see real change happen.
The organisation Action for ME used to be based in the centre of Bristol but is now based just outside. What really hits home is its raison d’être, as set out on its website, which says the organisation exists
“to take action to end the ignorance, injustice and neglect faced by people”
who have ME. Most other campaign groups for medical conditions do not have to start from there; their starting point might be to raise awareness of the symptoms of a particular conditions, or to make calls for treatment. To have to start from the point of view of emphasising the injustice and neglect, because so many people deny that ME exists, just shows how much of a battle we have on our hands.
It was an excellent speech by the hon. Member for Glasgow North West. As she said, ME affects around 250,000 people in the UK. I will just cite one of my constituents, who contacted me to stress the lack of support and understanding that had been experienced when dealing with medical professionals; there are many people with ME for whom it takes a long, long time to get a diagnosis, because of that lack of support and understanding.
My constituent got in touch to share the story of her close friend’s 28-year-old son, who has had ME for last couple of years. She said that the impact on his life has been catastrophic. He was a highly skilled and highly valued journalist for a national newspaper, with a busy and vibrant professional and social life. Since contracting ME, he has been unable to work and is now living at home with his parents, who act as his carers. He has severely limited energy, he is in constant pain and he has obtained no relief or satisfaction from the treatments currently available through the NHS, his GP and the specialists to whom he has been referred. His parents have been left to research and self-fund investigations and treatment themselves, which is plainly not good enough.
In Bristol, we have a chronic fatigue syndrome/ME centre, but it has no doctors and focuses primarily on training in activity management. One of my constituents who received treatment there was highly complimentary about the staff, but she echoes the view of many other patients that occupational therapy is an inadequate approach for people with a highly disabling, multi-systemic disease.
The current National Institute for Health and Care Excellence guideline recommends treatment consisting of graded exercise therapy and cognitive behavioural therapy, but it has been criticised by all ME charities, patient organisations and representatives registered with NICE as stakeholders. We have already heard from a few people today about that.
On that point, one of my constituents is a 15-year-old who finds the graded exercises very debilitating; actually, they make her condition worse, which has been echoed by ME charities and the ME community. Does the hon. Member agree that we need to look at graded exercise again in the new NICE guidelines?
Yes. So much concern has been expressed about graded exercise therapy and many patients prefer the concept of pacing, which is balancing activity and rest to help them to manage their ME and work towards recovery. However, that approach is not currently recommended by NICE. I very much hope that the Minister picks this issue up, because it is probably the most controversial issue around the treatment of ME at the moment. I welcome NICE’s decision to review its guidelines—the new guidelines are expected in October 2020, I think—and I urge NICE to listen to the voices of patients with ME.
We have heard from other speakers about biomedical research and the decades of underinvestment in that research. We have also heard that the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government. We can also consider the economic cost of not helping people at least to find a way to manage a condition such as ME; ideally, we would find the cause of ME and a cure for it. Clearly, that economic cost is unacceptable.
The hon. Member has made a very important point about the decades of underinvestment. A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s. The impact on his life has been total. He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs. But as he quite painfully put it to me, he has not had the chance to fail. His is a life unlived. So, given those decades of underinvestment, it is so important that we now change things for the future.
Yes. This is the problem we see over and over again with NICE: how do we value quality of life? We can look at the economic opportunities that are also lost if someone has to spend a lifetime on benefits rather than working and paying taxes, but there is so much more that they could perhaps have contributed to society and that opportunity has simply been lost.
In the time that is left to me today, I will mention the benefits system. We have already heard from other Members about it. Time and time again, we see that the assessments for employment support allowance and for the personal independence payment just cannot cope with people who have fluctuating conditions, or with people who might be able to pass a test but who feel absolutely dreadful afterwards.
My friend scored zero on the test because she was trying to be as honest as possible, and if she was asked whether she could walk up a flight of stairs, she would reply that she could. However, on a bad day it would probably take her an awfully long time and she would collapse in a heap at the top. Actually, one of the reasons she was turned down when she went for the face-to-face assessment was that the examiners said, “Well, you look very presentable and you’ve washed your hair.” I know that she is bedridden for days at a time and cannot wash her hair, but clearly if she drags herself out for an assessment and is well enough to attend it on a particular day, she will try not to look like she has just got out of bed.
Does the hon. Member agree that such questions are entirely unsuitable for people with many conditions but particularly for ME sufferers? “Can you walk up a flight of stairs?” “Yes, but it wipes me out for three weeks afterwards.” The examiners are not interested in the “but”. That does not figure in the questions.
Yes, we need a system that is sensitive to the people who are taking the test, rather than being a series of tick-box exercises—yes or no.
Action for ME gave some interesting evidence to the Work and Pensions Committee when it conducted an inquiry into ESA and PIP towards the end of last year. Action for ME cited one case study of a man who, as well as having ME, is registered blind; he can only just perceive some light. He said, “I’m not disabled by blindness. In comparison to living with ME, my blindness is just an inconvenience.” When it came to the assessment, of course, his blindness scored maximum points, but his ME did not register at all. He said, “Actually, with my blindness I can still go out and walk my dog, but it’s the ME that means I’m housebound. With blindness, I can use audiobooks, but my ME means that I just can’t concentrate for any period of time.” But one condition is accepted as a disabling condition, while the other is not. There is a perception that ME is just about being tired all the time but, as one ME campaigner said:
“The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”
I was going to mention the case of Merryn Crofts, but my hon. Friend the Member for Heywood and Middleton (Liz McInnes) is here and she is her MP. That is clearly an incredibly tragic case—the second person in the UK to have ME recorded as the reason for death on her death certificate.
Instead, I will conclude by mentioning the documentary “Unrest”, a screening of which I attended. Jennifer Brea, a 28-year-old ME sufferer, documented her condition with a camera when doctors told her that her illness was all in her head. Using Skype, she connected with others around the globe suffering with ME, and documented their plight. It is a powerful and moving documentary about the realities of life for many people with severe ME, and I would encourage anyone who is looking to gain a better understanding of the illness to watch it.
It is a pleasure to serve under your chairmanship, Mr Rosindell. I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan) for this campaign, which she is doing a superb job of leading. I cannot remember the name of the academic who wrote to her reproaching her for the stance she has taken in the campaign, but I say to her, I think on behalf of us all, that she is doing exactly what an MP should be doing, and shame on anyone who says otherwise.
I specifically compliment the hon. Lady on her presence at the recent Edinburgh event with the hashtag #MillionsMissing—a global day of action. The purpose of that event was to raise awareness, to highlight the need for support for ME sufferers, and to call for investment in healthcare and biomedical research, which is an excellent summary of the purpose of today’s debate. As has been mentioned, every participant in that event was invited to bring a pair of shoes, but what touched me deeply in the event publicity was that those pairs of shoes symbolised the millions of patients who are missing from their lives because of this devastating disease. The phrase “missing from their lives” deeply touched me.
I rise to speak just for a few minutes to highlight the experience of those who are affected by ME. As my hon. Friend the Member for Cheltenham (Alex Chalk) said, their evidence is compelling and should be a primary consideration. It has been upsetting for me to hear how many people, including those in the medical profession, are unaware, or lack a detailed understanding, of ME. Many persist in believing that the disease is some form of mental illness or neurological disorder. A constituent in Stirling told me that as recently as 2011 they were told, “There is no such thing as ME,” after collapsing at work. She has since been diagnosed with severe ME.
There are many distressing stories about the treatment of people suffering from ME. Another of my constituents was told repeatedly by different doctors that her ME was a psychological problem, and was referred on multiple occasions for psychological assessments. It took her two and a half years to get a proper ME diagnosis.
Does the hon. Gentleman share my concern about the aspect of “medically unexplained symptoms” diverting ME down the psychological path?
I absolutely agree, and I thank the hon. Lady for her intervention.
I cannot speak too highly of Helen Hyland, a constituent of mine, who has done so much to raise awareness of the condition across the UK in her role within the ME Association. She has also done so much to educate me as her Member of Parliament about this disease. Soon after my election as the Member of Parliament for Stirling, Helen reached out to inform me of what I could do to help the campaign. I am grateful that my office and I have been able to work with her to highlight ME to GPs in Stirling. I am not sure how they have responded to a letter from their Member of Parliament advising them to be careful about how they diagnose those who have the symptoms of ME; I am sure that is a different story.
Helen has been involved with the ME Association since her husband took his own life, a year after being diagnosed with ME. The way she told her children, who were very small at the time, of her husband’s passing outlines how hard ME is to cope with. She said:
“Imagine a Dr Who monster getting inside and taking over Daddy’s head and body. The harder Daddy fights, the harder the monster fights back. The monster always wins”.
For people with ME and those around them, the diagnosis is crucially important. To be told that they have a medically recognised condition is validation for them, yet there is still so little known about this illness. There is no easy way of diagnosing it, no clear treatment, and no known cure. That has to change. Along with many others, I will continue to support the ME Association and any campaign that pledges itself to combating ME.
I will now turn to the first-hand account of a lady called Jules Smith, who wrote to me and asked me to make her voice heard in this afternoon’s debate. I will do that because her story, as touching as it is, is not her story alone, but the story of many others. She wrote to me:
“For over ten years I was a therapist and devoted my life to helping others as best I could.
I first became ill about 8 years ago but kept going and put it down to general aches and pains. I finally had to give up what I loved in November 2016 with a final diagnosis of severe ME in May 2017.
I’ve been to psychology to be told it’s all in my head, pain management to be told to push through the pain and physiotherapy who told me my muscles were so weak there was nothing they could do!
I’ve been on so many prescribed medications and vitamins; last year I was taking in excess of 22 tablets a day and yet I would still crash.
I am 90% house and bed bound and my GP has exhausted all avenues for me therefore—as I was told—‘you must try and manage your illness as best you can.’
I had been told that graded exercise therapy would help me starting off by stretching then low impact sports like walking. I’m an ex-runner who was capable of running a 10k every week so I was familiar with pushing through the pain barrier and grading my exercise but it has made me more severe. I feel like my life is just wasting away; I get all my prescription medications on repeat, I get a telephone appointment with my GP every once in a while, and that’s it!
My husband works long shifts with the Scottish Prison Service and I’m home alone for at least 10 hours a day; sometimes I have to crawl on my hands and knees to get to the bathroom and I can go days on end without being able to bathe or shower as I’m just too exhausted to move!
I feel like so many others that we are just left to rot; I feel like my mental health is now suffering as I become more and more isolated from society and there’s no one to help me and many others just like me.
I am severely fatigued to the point that I cannot stand upright otherwise I get so dizzy I’m about to faint. I also have severe laboured breathing but there’s nothing recommended but rest and resting doesn’t cure ME.
I don’t wallow in self-pity. I spend what time I can online being an advocate for Action for ME and Millions Missing Scotland and whenever I can, I offer support to other members of the social media groups I am in and share my stories and experiences.
I have a devoted and caring husband who does everything he physically can to look after me but it’s tough when I’m home alone for so long with no care.
I try to do what I can to keep my spirits up but on days when I crash for no reason and I can’t watch TV, or read a book, I have to have my curtains drawn and be in a darkroom. Sometimes I even need soft silicone earplugs to block out any noise as I get cognitive dysfunction too!
This is not living Stephen this is just existing!”
I thank Jules for allowing me to share her story in the debate. I am grateful and feel privileged that I was allowed to let her voice be heard today in Parliament.
It is a pleasure to serve under your chairmanship, Mr Rosindell. May I first say how moving and graphic the speech from the hon. Member for Stirling (Stephen Kerr) was? I am so pleased that I was here to hear it.
I shall speak briefly because much of what I would have said has been said already, but I want to add my voice to all those demanding that we take ME seriously—that in the future, doctors and the medical profession do what they can to find out what causes it and to deal with that, but also to make lives bearable and strive to find cures if we possibly can.
I first became aware of ME some 30 years ago when two young relatives—close relatives, although not in my immediate family—contracted ME. They suffered for a long time during their childhood and youth. The condition is much improved now, but I became aware of the medical profession’s lack of belief in ME. They were constantly told that it was a psychological problem, not a medical or physiological one. We now know better.
There has been discredited research, such as the PACE trial—and others, no doubt—which is now being dismissed, and not before time. However, the medical profession and, indeed, Governments will grasp at things that encourage them to do nothing, or not to do something that is very difficult. To deal with it is very difficult.
We heard from the hon. Member for Chippenham (Michelle Donelan)—she has just left her place—who is the co-chair of the all-party parliamentary group on Lyme disease. I also belong to that group, because I had a very dear friend who suffered terribly from Lyme disease and who was not diagnosed for years. She suffered terrible psychological and physical problems, as well as marital break-up and so on. If people are not properly diagnosed and are not given the proper treatment and sympathy, they can suffer even worse than they do with the disease.
[Mike Gapes in the Chair]
The conditions vary enormously. People suffer very different symptoms, and some people suffer very severe symptoms. I had one constituent who, like so many others, could not get out of bed for long periods and had to live in a darkened room because looking at light was too painful. The idea that such people would have their condition dismissed as some sort of psychological phenomenon is complete nonsense and utterly cruel.
I have taken up this issue in the recent past, prompted by an old friend, Dr Ian Gibson, who was a Member of Parliament for one of the Norwich seats. He wrote to me about the PACE research, dismissing it as nonsense in the very strongest terms. He asked me to table a series of parliamentary questions, which I did, and I like to think they had some influence on the Government’s thinking. I hope the Minister will recognise the depth of feeling about the appalling way ME sufferers have been treated for so long, and start to take steps to correct that.
We are used to having experts tell us things and deferring to them, rightly in many cases, but of course sometimes experts get it wrong. Sixty or 70 years ago, some doctors were known to recommend that patients take up smoking because it would be good for their health. No doubt, some of those people died of lung cancer later on. It was a terrible thing to do, and some of those doctors should have felt rather guilty about that afterwards.
There was a particular case in the 1960s of a noted famous psychologist who wrote books about psychiatry that were regarded as bibles by young people. His view was that there was no such thing as mental ill health; it was just a different way of viewing the world. He was famously debunked when he was speaking at a conference to an audience of schizophrenics. They got up and said, “You are trying to tell us we are well. We are telling you: we are not.” People are suffering, and they are constantly being told that they are actually well—that they are just putting it on, or, as he said, that it is an alternative way of viewing the world. At the end of his life, that famous psychologist publicly recanted on the radio, after he no doubt caused much suffering to many people through his life.
We must always make sure that there is a proper evidence base and that statistics are properly measured. We had a paper circulated to us that shows that the PACE statistics were false. They just did not work. We want more resources put into making sure that proper research is done and that ME sufferers are properly supported financially and medically. We have to find what causes it. We have to find cures where we can, and we have to make the lives of people who suffer from ME a lot happier in future.
I have said more than enough. I wanted to add my voice to all of those who have spoken so brilliantly today, in particular the lead speaker, the hon. Member for Glasgow North West (Carol Monaghan), who made a brilliant and eloquent speech that I am sure we are all very grateful for.
It is a pleasure to serve under your chairmanship, Mr Gapes. I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this very important debate.
Merryn Crofts, who has already been referred to in this debate, is one of just two people in the UK who have had myalgic encephalomyelitis recorded as the cause of death. She was my constituent and lived in Norden in the Rochdale area of the Heywood and Middleton constituency. I spoke with her mum, Clare, this week, who told me that the reports about Merryn in the newspapers did not really cover the whole of Merryn’s condition. Clare wanted to be here today to hear the debate, but could not travel to London because of a new baby in the family, so I hope that she is able to watch the debate back home in Rochdale. I send my best wishes to her and to the new baby.
As do all of us.
Indeed, from all of us. Merryn met all the diagnostic criteria set by NICE, and the Canadian consensus criteria, for a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. Merryn was totally bedbound. She physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position or even if her bed was raised slightly. She was hypersensitive to noise, light, touch and movement. She suffered so badly from pain—head, muscle, neurological and stomach pain—that she could not get out of bed. Her GP had worked in a hospice for 10 years, looking after cancer patients, and said that in that job she could not always take away pain, but she could manage it. In Merryn’s case, the GP said that her pain was unmanageable. Although Merryn was on diamorphine and ketamine, she was still in pain. Any kind of stimulus, even just a nurse walking in to the room, was an exertion to Merryn. She was permanently on syringe drivers and receiving injections. She was permanently nauseous.
The terms ME and chronic fatigue syndrome are often used interchangeably, but Merryn’s mum tells me that fatigue was the least of Merryn’s symptoms. In her view, the use of the term chronic fatigue syndrome should be abandoned, as myalgic encephalomyelitis is about so much more than just fatigue.
Merryn was only 15 years old when her illness started. For the first year, she was not housebound and she used to go out in a wheelchair, but as her condition worsened she became unable to go out. She went from a young girl who loved life, with passions for drama and acting, to a housebound patient, whose family had to do more and more for her, even things like chatting on her behalf on social media—simple things that she was no longer able to do on her own.
I mention social media because Merryn was helped a great deal by the online ME community. Her mum tells me that Merryn always wanted positive support and was very choosey about who she communicated with. She did not want to speak with people who exuded negativity, but she was part of a big online ME community, which included people such as ballet dancers and sportspeople. That raises the issue of whether research should look at the lifestyles of those who contract ME and whether there is a susceptibility that can be exacerbated by leading an active life and pursuing strenuous sports or vocations.
Merryn’s mum is critical of the PACE guidance given by NICE and attributes the worsening of Merryn’s condition to it. She tells me that Merryn thought she could push through the condition and keep going, although her family really wanted her to slow down. Sadly, it was only when the family contacted a private medical practitioner that Merryn was given the advice to slow down and told that she needed to rest. The specific advice given was,
“Whatever you feel you can do, only do 50% of it.”
Merryn’s mum feels very strongly that had Merryn been given that advice when her condition started, she might not have gone on to develop severe ME, and she strongly urges that the NICE guidelines should be reviewed. Merryn’s mum said,
“If the PACE trial were a drug, it would have been banned by now.”
I hope and I am sure that the Minister will refer to that in his response.
Merryn’s family are still very involved in the ME community and they run the “MErryn’s Legacy” Facebook page, which raises money for research and includes fundraising activities such as skydiving and climbing Ben Nevis: impressive feats that are done on behalf of the ME community as representative of the things they would like to do but are unable to because of their condition. The fundraisers do those activities on their behalf.
We need to invest more in research into ME. The best research, as has already been mentioned, is being done in the States. Here it is very much funded by charities and tends to concentrate on psychological issues rather than physical changes such as inflammation of the brain and changes to the central nervous system, and we need to do much more research into the physical aspect.
Nancy Klimas is a major ME researcher based in Miami. She has more than 30 years’ professional experience and has achieved international recognition for her work on ME. She compares patients with severe ME, like Merryn, with those in the terminal stages of HIV/AIDS infection in terms of the levels of pain that they suffer. Many comparisons can be drawn between HIV/AIDS and ME. When HIV was first identified it was thought to be incurable and a certain death sentence, but incredible research has produced advanced treatment with retrovirals, which, although they do not provide a cure, can be used to manage the disease, and it is no longer the death sentence that it was.
In comparison, ME is not seen as a death sentence, but, as Merryn’s case sadly shows, it can be fatal. It is also described as a kind of living death. The work done on HIV/AIDS shows how powerful good research can be. I hope that in future, following investment in ME research, we may also see great advances made in the treatment and knowledge of ME.
We also need to invest more in training for our doctors, especially general practitioners who are the clinicians likely to be the first port of call for those suffering with ME. Our GPs need the skills to recognise the signs and symptoms and to signpost patients to the appropriate specialists. I hope that the Minister might be able to refer to those points in his response. I am immensely grateful to Merryn’s family for sharing so much with me and for allowing me to tell her story.
I thank the hon. Member for Glasgow North West (Carol Monaghan) for securing this debate and for speaking so passionately. I stand with her and all the people affected by ME in not allowing the voices of ME sufferers to be silenced by anyone for any reason.
In Plymouth, ME affects between 500 and 1,500 people. I agree with the sentiments expressed by hon. Members in the Chamber today that it does not get the amount of attention it deserves, in many cases because of the stigma that has been attached to it for far too long. I have heard people shrug off the condition as laziness or as something in people’s heads. Attacking the stigma and the people who peddle it needs to be an important part of how we build the case for proper action on ME.
A few days ago I mentioned on my Facebook page that I wanted to speak in the debate and I asked for stories from people in Plymouth. I have done that before for various debates and have always been struck by the level of honesty and directness that comes from people simply telling their story, not as a politician but as a person. I will share some of those stories today mainly because the speeches before mine have expertly and succinctly explained the problems with the PACE trial and current treatments. I want to make sure that those voices are heard. One word came through in nearly all of the posts on my Facebook page and on my Twitter, and that word was “invisible”. People with ME feel that they are not believed, that their condition does not matter and that nothing is being done about it. I want to address what it means to be invisible and what we can do.
“Just getting up the stairs lays me out for hours. Having a shower leaves me laid out in a darkened room. I can’t work anymore (believe me not for want of trying!) I can’t do drama, Rock Choir or Zumba in fact just making a cup of tea leaves me as exhausted as Zumba used to! I lay alone at home. I live vicariously through FB. I still get out when I can but it will usually cost me days or weeks in bed. I am one of the ‘lucky’ ones. I am not totally bed bound. But I pay for this with my invisibility. I ‘look’ so well! No one can see my pain. I smile and say I am fine then go home to bed.”
The word “invisibility” is key here. People talk about it time and again in terms of how the condition affects their lives and relationships—my hon. Friend the Member for Bristol East (Kerry McCarthy) talked about that—and how it often makes them doubt their validity and whether they are telling the truth.
Several people told me about how having ME also affects their mental health, which the hon. Member for Cheltenham (Alex Chalk) talked about earlier. Catherine wrote:
“I first became ill just before my 21st birthday. I spent weeks needing to be cared for full time by my parent—including being carried by my dad because I was unable to walk. I am always in pain, have difficulty doing things that most people take for granted and lost much of my long-term memory. Long term it affects my memory and focus, my ability to function on a daily basis. I am constantly tired no matter how much I sleep. I have lost friends and needed to give up a career in teaching that I loved. I walk with a stick much of the time, especially in the winter...because my balance is bad and I fall easily. I suffer depression, bouts of anxiety”,
“problems that can be very embarrassing and never know whether the next flare might put me back where I started.”
ME is not simply one thing on its own. We need to recognise that mental health problems can stem from the experience of living with ME. It adds to the condition and is not just a part of the condition itself.
Like my hon. Friend, I have heard from many constituents affected by ME who asked me to come today to make their voices heard. He made the point about invisibility earlier, but some of the people who are not able to get out do things from their beds. For example, one of my constituents organised the lighting up of the Tyne Bridge in blue last year, so there are things that people do to make sure we get the message across.
Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.
I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:
“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”
The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.
My hon. Friend will be interested to hear of the 17-year-old son of my constituent, who first contracted the illness as a young child. It took seven years to get a diagnosis. That is an incredibly large proportion of a young person’s life in which to suffer appalling ill health with no proper medical intervention.
I want finally to mention Maya, who got in touch about her sister, who is affected by ME. She says:
“Chronic illnesses need far more support and recognition than they get.”
Her sister—like Maya herself, who has fibromyalgia—
“faced repeated uphill battles to get the help she needs, and that’s even been with health professionals.
It’s so little talked about that even doctors and nurses have been stumped as to how to help her. This disease cripples and takes lives and we need to be doing more.”
There is something that we can take from the debate today, which was mentioned by the hon. Member for Cheltenham in relation to brain tumour research—the fact that the power of talking about a condition can bring about change. We saw that with Baroness Jowell, and it is happening today with motor neurone disease, as it is global MND Awareness Day. People are talking about their condition. We also see it in the work on fibromyalgia being done by my hon. Friend the Member for Chesterfield (Toby Perkins). It is a matter of talking about things that are not often talked about. The importance of debates such is this is in raising awareness. People with ME are not invisible. They are as human as we are, and need to be seen and heard. That means investing in proper medical research and in medical education for practitioners, and in a relentless fight against stigma for all people with ME.
The hon. Gentleman began by talking about stigma—the stigma of laziness or of something “in the head”. We all know that the sort of people afflicted by ME are certainly not lazy. As to its being in the head, there may be some psychological causes of ME but it is none the less an illness, and to treat it as if it were not is to reinforce the stigma that has been so damaging with respect to mental health.
Absolutely. I think those were the most words I have heard the right hon. Gentleman say since I was elected. He is famous for short questions. I agree entirely, and the challenge of addressing stigma is understanding, because stigma builds where there is not a clear evidence base, and there is no understanding of what is happening to an individual—we do not know whether it is one or many things. That is why medical research is essential. It is also why understanding how the condition changes day to day is important—as is the way the Government prepare and support individuals. The DWP assessments are a great example. The assessment system at the moment is built around a system that does not adequately recognise the day-to-day lived experiences of those with ME.
We can carry on the relentless fight that is needed against stigma, to encourage more research, if we keep talking about ME and remember that people who have it are not invisible. They have a voice and must be heard.
It is a pleasure to serve beneath your benevolent oversight, Mr Gapes. I am pleased that my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) is on the Opposition Front Bench, and am also pleased to see the Minister. Those two people combine deep humanity with real understanding of how illness is examined, and how stereotypes and stigma can be challenged. Above all, I pay tribute, as everyone who has taken part in the debate would wish to do, to the hon. Member for Glasgow North West (Carol Monaghan). I was one of those privileged to support her in applying to the Backbench Business Committee. It is interesting that sitting with her at the table were members of the Scottish National party, Plaid Cymru, Labour and the Conservative party. There were no Liberals there at the time, but the right hon. Member for Kingston and Surbiton (Sir Edward Davey) was present earlier.
We supported the application for a debate so strongly not only because there is a crying need for some proper authoritative research at last but because of the personality of the hon. Member for Glasgow North West and the way she argued her case. She is not just a great humanitarian, but a scientist. She was a physics teacher, and is a pilot. She understands the importance of empirical evidence and data, and wants to see scientific evidence. On the occasion of our application, someone said that encephalomyelitis is probably the illness with the worst public relations officer ever, because there is no other illness so badly presented, or about which so much nonsense is spoken, or that has so many stigmas and stereotypes. One reason I supported the hon. Lady was that she seeks to cut through all the nonsense, get back to proper, hard scientific evidence, and move away from some of the dismissive, cruel and frankly painful comments that are made.
There are a number of arguments in favour of proper analysis and, subsequent to that, treatment, research and proper therapeutic assistance for what is a ghastly, debilitating illness. There is the economic case. In September 2017 the Optimum Health Clinic Foundation produced a detailed breakdown, in which it was calculated that the illness costs the UK economy more than £3 billion a year. That is an argument that can be made, but I would go beyond Gradgrind, and that sort of desiccated, calculating machine politics, to the humanity.
I want to talk about one particular group—children and young people. I am sure that it has already been mentioned that 21 years ago Dowsett and Colby produced detailed research showing that the biggest cause of long-term school absence was, as Members may guess, encephalomyelitis. Let us imagine the situation. A child at primary school has the symptoms of encephalomyelitis but does not know the name, probably could not pronounce it, and does not know what it is. However, they cannot get themselves to school. I am not talking about the schoolboy, with his
“shining morning face, creeping like snail
Unwillingly to school.”
I mean a child who simply cannot get out of bed or off the sofa or couch, and to school. What happens to such a child? I will tell the House—often they are referred to social services. Child protection referrals are often made because a child misses school. Imagine the impact on that child, family and school. I have known you long enough, Mr Gapes, to know that you have the milk of human kindness flowing through your veins. Can you imagine what it must be like for a primary school-aged child who is suffering from something terrible that they cannot even put into words to be penalised for it—interrogated and asked to prove that they are ill when they can hardly bring themselves even to speak or raise the energy to make their case? How cruel.
In some cases, the parents simply will not know. One reason I am so particularly keen to get some proper empirical data and research is that a family can have four, five or six children, and one suffers but the others do not. Imagine how the one child must feel, and how the other children will react to the one child. Can we imagine anything more brutally cruel than a situation in which a child is trying to pursue their education but is physically incapable of doing so? The great lesson that we learned from Sure Start—and, earlier, from the Jesuits—is that getting things wrong in the first seven years usually means they are wrong for life. If a child is suffering in the way I described, in the first few years in primary school, I despair for their future.
We must cut through all the mist, fog and obfuscation—the stigma, and all the words and insulting expressions—and do some research. Is the condition psychological, physical or psychosomatic? What is it? We know it cannot go unaddressed any longer. We cannot allow another generation to grow up incapable even of giving a name to what they suffer from. If diagnosis is not possible, what is the prognosis and the therapeutic response? What is the health service doing? What of primary care and the GP service? If they do not have the data, they cannot produce a cure. I do not make the economic argument, although obviously it is important. We need productivity and economic activity. However, it is above all the sheer humanity of the case made by the hon. Member for Glasgow North West in her brilliant speech that will have swept along everyone who heard it today. We simply cannot allow this situation to continue any longer. It is too painful, cruel, counterproductive and dangerous, and we are losing young people.
I know that there is mature-onset ME—it is not just children who are affected—but the people it affects have good advocates, and great speeches have been made on their behalf this afternoon. I want to make the case for children, because they can very seldom make that case for themselves. I look to the Minister and my hon. Friend the Member for Washington and Sunderland West. Today is the day when we finally start to take encephalomyelitis seriously and stop condemning people suffering from this ghastly, debilitating disease. Today is the day when we say, “Yes, we understand the pain people suffer. Yes, we are going to do something about it. Yes, we respect you. Yes, we value you. Yes, today we are going to start investing in diagnosis, analysis and, God willing, a cure.”
It is a pleasure to serve under your chairmanship, Mr Gapes. I pay tribute to my hon. Friend the Member for Glasgow North West (Carol Monaghan) for securing this debate, for setting out the issues so powerfully, and for sharing the sad case of Merryn Crofts, which the hon. Member for Heywood and Middleton (Liz McInnes), her MP, elaborated on.
I want to say to Professor Sharpe that it is not my hon. Friend’s conduct that is unbecoming; it is his. Sending such emails does nothing for the reputation of the scientific research community, and he should apologise.
People with ME and related conditions do not believe their voices and concerns are properly listened to. With that in mind, I pay tribute to the hon. Member for Stirling (Stephen Kerr), who shared with great compassion Jules Smith’s story, which deeply affected Members from across the House. We sometimes talk about health issues in this House abstractly without fully conveying the impact they have on people’s lives. Well, not today.
Action for ME and the ME Association are both well represented in the Public Gallery today. Along with many other organisations, they do vital work to champion and support the 250,000 people across the UK who suffer from this condition. On its website, Action for ME tries to increase people’s understanding of ME by asking people to imagine a number of situations:
“Imagine having months off from work because you are so ill, so pole-axed by fatigue and pain, that you are no longer able to tell the time when you look at the face of a clock. Imagine you can no longer read even the shortest paragraph because your power of concentration is reduced to zero.”
One of my constituents, whom I have subsequently met twice, wrote to me about the experience of living with ME. She said:
“One of the things that society needs to get to grips with is the fluctuating nature of ME where an individual may appear to be fine one day, yet the next day they are bed ridden or much worse, or they may appear fine but really aren’t. Unless people have x ray vision, they cannot see the brain, spine, muscles, heart, cells and so on of another individual. The condition fluctuates not only from day to day and week to week, but it can vary from hour to hour. And of course there is the aspect of…post exertional exacerbation of symptoms. That is, after exertion their ME symptoms often flare up”—
although that can be delayed.
“For one person that exertion may be as little as getting up to brush their teeth, for another it may be that they worked 4 hours that day instead of the 3 that would have been manageable. This could leave them ill the next day or being off work for a week. There can also be a sudden and severe decline in symptoms. For example, an individual may have gone out that day feeling ok, but whilst out they suddenly reach saturation point and their levels of physical fatigue and pain may be intolerable.”
That is the experience of 250,000 people in the UK. It is important that we do much more as a society to find a cure for this disease. Sadly, the majority with ME do not have access to adequate care and resources. Shamefully, they also face ignorance and injustice from people who should know better, including medical professionals and the Government. Many primary care professionals receive minimal training on ME, and it continues to be dismissed as “medically unexplained”.
Treatment for ME currently focuses on addressing the condition’s symptoms, but, as we have heard, concerns have been raised many times about the recommended treatments, such as cognitive behavioural therapy and graded exercise therapy. Like other Members, I am glad that NICE is reviewing its guidelines, and I hope ME sufferers are at the heart of the review’s outcomes.
The Government’s welfare reforms are causing a lot of heartache and stress for millions of people, including people with ME, many of whom struggle to access welfare benefits. The written evidence that Action for ME submitted to the UK Parliament’s Work and Pensions Committee’s inquiry into personal independence payments and employment and support allowance assessments, which the hon. Member for Cheltenham (Alex Chalk) touched on, raised serious concerns about how the welfare state treats people with ME. Its research found that assessors do not have a sufficient, or even basic, understanding of the condition, and so cannot carry out accurate assessments of people affected by it. That causes assessors to misinterpret the condition, wrongly diagnose it and file inaccurate reports, which have dire consequences for people’s benefit entitlements.
That basic lack of understanding of ME is forcing individuals down the mandatory reconsideration and appeal route to get access to the benefits they are rightly entitled to. Some 76% of people with ME who are forced to do that believe that the initial assessment failed to represent their condition or needs properly; 52% believe that the assessment was not conducted fairly or appropriately; and 32% say that the amount they were awarded did not cover or meet their needs.
That experience is familiar to one of my constituents, whom I assisted recently. She has ME and other medical conditions, and she told me that
“ESA and PIP assessments are designed in a way that discriminates against people with ME and other fluctuating and unseen conditions. This causes untold distress and harm to people with ME, who already feel very vulnerable and unheard.”
She also believes that the assessments have led to her condition deteriorating, and that
“without a shadow of a doubt”
she would have been able to go back to work a long time ago if it was not
“for the recurring relapses caused by a system that is supposed to support you while ill and while trying to recover, and instead it causes harm. It is exhausting, demeaning and damaging to recovery.”
She feels that
“people with ME often feel ridiculed, abandoned and even bullied and abused. It is a highly vulnerable place to be when your basic needs (and in some cases your continued existence) and the way you are treated and viewed by society is dependent upon the understanding of those with power”.
I am sure she is not the only one who feels that way.
I accept that ME can be an invisible condition, but surely the Government can take that into account so people receive fair assessments. As my constituent said,
“the more people who begin to learn the truth about this devastating condition, the sooner people with ME can begin to be treated with the respect and dignity that people with serious medical conditions are entitled to.”
As a society, we need to challenge ourselves better to understand this condition, and that should start with the Government. The Scottish Government have funded a project to educate health and social care professionals, and improve the health and social care support available to people with ME. The Inform ME project will develop a peer mentoring, self-management support network to build confidence and reduce isolation among people affected by ME.
We have heard today that it is accepted that not enough research has been done to increase the knowledge of the different forms of ME. However, the UK CFS/ME Research Collaborative was created in 2013, and it is hoped that greater attention will be brought to this area. It is true that ME has received far less research funding than other conditions with a similar prevalence and disease burden. The funding has tended to be for psychological and behavioural studies, rather than biomedical research. As my hon. Friend the Member for Glasgow North West outlined, the Scottish Government are taking steps in this area and have recently announced a PhD scholarship focused on improving the understanding of ME.
People of all political persuasions and none want to see a world without ME. The Minister has listened to many strong views this afternoon. I know he is eagerly awaiting the outcome of the NICE review, but I hope he will take on board and reflect on the points that have been made today—in particular, those relating to GET and the DWP’s procedures for ME. I hope we can help people living with this condition sooner rather than later.
It is a pleasure to serve under your chairmanship, Mr Gapes.
I thank the hon. Member for Glasgow North West (Carol Monaghan) for her excellent speech setting the scene today and for securing this important debate, and I thank the Backbench Business Committee for granting the time for it. I also thank all hon. Members who contributed. A great number of them did so: the right hon. Member for Kingston and Surbiton (Sir Edward Davey), the hon. Members for Mid Dorset and North Poole (Michael Tomlinson), for Cheltenham (Alex Chalk), for Strangford (Jim Shannon), for Stirling (Stephen Kerr), for Luton North (Kelvin Hopkins) and for Paisley and Renfrewshire North (Gavin Newlands), and my hon. Friends the Members for Stroud (Dr Drew), for Bristol East (Kerry McCarthy), for Heywood and Middleton (Liz McInnes), for Plymouth, Sutton and Devonport (Luke Pollard) and for Ealing North (Stephen Pound) all made excellent and moving speeches. I thank the many other Members who made excellent interventions. The packed Public Gallery and the number of Members attending and speaking in the debate on a Thursday afternoon shows the strength of feeling on the subject not only in Parliament but in the nation as a whole—more should be done to help people with ME. They should get the help, recognition, support and treatment that they deserve and need.
I thank MEAction, Action for ME, the ME Association and the ME Trust for the detailed brief that they sent me, and ME North East and especially the Sunderland and South Tyneside ME support group including Professor Malcolm Hooper—I first met him way back in 2010 on this very issue—for all the work that they do to campaign for better care, support and recognition for people living with ME. We have heard today in great and moving detail from numerous Members sharing tragic and very personal stories from their constituents, whom we thank for allowing their stories to be told.
ME is a neurological disease, or a disease of the central nervous system, but that does not begin to explain how devastating it can be to have to live with it—or die from it, as happened so tragically to 21-year-old Merryn Crofts. I thank my hon. Friend the Member for Heywood and Middleton, who was her MP, and the hon. Member for Glasgow North West for sharing her story with us in some detail—I especially thank her family for allowing that—and helping to make the case so strongly in the debate.
ME affects an estimated 250,000 adults and children in the UK and about 17 million people worldwide. Despite the fact that so many people are affected by ME, it is little understood in the medical world, leaving patients feeling dismissed, neglected and stigmatised further by their condition. That can be no surprise, as no significant research has been done into the condition, as we have heard. ME receives far less research funding than other neurological conditions of similar prevalence or disease burden. The answer to a written question from the hon. Member for Glasgow North West revealed that the average research spend per person living with ME is only about £1 a year, as she said. Also, the majority of that research spending does not even come from Government; it comes from the charity sector.
Does the Minister think that research into this condition should be left entirely up to the charity sector? The ME charity sector in the UK does a fantastic job of researching the condition. For example, the UK ME/CFS Biobank is a vital part of the ME research infrastructure and has achieved an international reputation. All the start-up costs for the ME Biobank were funded by the charity sector, and ongoing costs are met by the ME Association’s Ramsay Research Fund. Do the Government have any plans to contribute to that research?
Patients with ME feel that they have been let down time and again as research such as the PACE trial—which, sensibly, we heard about—have been found to be seriously flawed. In fact, Jonathan Edwards, emeritus professor of medicine, said that the PACE trial would be a great example
“in an undergraduate textbook as an object lesson in how not to design a trial”.
In addition, a petition signed by more than 12,000 individuals —mostly patients, but also more than 90 scientists and clinicians—and more than 50 patient groups worldwide have demanded a retraction of the results of that trial. Does the Minister agree that ME patients deserve a trial that they can trust not to dismiss their condition or recommend treatments that could make it worse? Do the Government have any plans to fund a proactive and co-ordinated piece of research on ME that patients can trust?
Given the lack of medical research into ME, healthcare professionals are, unsurprisingly, not sufficiently trained in diagnosing the condition, as hon. Members have told us today. According to several ME charities, coverage of ME in many medical textbooks remains inadequate and can be misleading or even non-existent. The chief medical officer’s report and the NICE guidelines on ME set out clear timeline markers for making an early and accurate diagnosis. Both recommend that adults should normally have had the diagnosis confirmed within four months of onset of symptoms, or within three months for children and young people. However, standard medical tests often find nothing wrong, which leads many doctors initially to dismiss ME as psychological.
In 2016 a patient survey by the ME Association indicated that only a small number of patients were receiving a positive diagnosis within six months of onset. Further experiences from the charity sector suggest that a majority of patients have to wait for more than a year, and a significant number for many years, before they receive a diagnosis. That means that patients are being dismissed and stigmatised further and, more importantly, are not then receiving the care and support that they need. Does the Minister have any plans to create a care pathway for people with ME to ensure that patients are given access to the care and treatment they require in a timely manner?
In addition, has the Minister made any assessment of the effects that ME, and the delay in diagnosis of it, have on women in particular? I find it incredibly illuminating that 75% of patients with ME are women. That leads me to believe that there is an issue of women’s pain being dismissed and not taken seriously by healthcare professionals. Will the Minister consider that issue in his response?
It is therefore clear that more training is required, not only for healthcare professionals but for welfare assessors. A survey by Action for ME found that 79% of survey respondents disagreed with the statement that their assessor had sufficient expertise of their condition to conduct an assessment effectively and appropriately. Symptoms of ME can fluctuate so much and are often invisible, as we have heard, so the condition is difficult to manage for patients and, it has to be said, difficult for welfare assessors to detect.
A patient may perform well during a welfare assessment, but an assessor will not see how long patients rested in order to perform tasks during the assessment, or how long it took for them to recover afterwards. As we know, the onerous and ill-conceived assessment process can result in not only an inaccurate award, but an exacerbation of ME symptoms, which can result in a long-term deterioration of the individual’s health. Has the Minister had any conversations with his ministerial colleagues in the Department for Work and Pensions on that matter?
From this excellent debate, it is clear that the majority of issues that arise from ME do so because the condition is so little understood. The Government should consider funding research into ME to further our understanding of the condition. The hope is that that would, in time, improve perceptions of ME and improve the routes to diagnosis, care and treatment.
I shall start where everyone else has started and thank the hon. Member for Glasgow North West (Carol Monaghan), who secured this important debate, very much. She did so along with my right hon. Friend the Member for Loughborough (Nicky Morgan), who has to be in her constituency today to deal with a royal visit—lucky her.
Raising awareness of this debilitating condition is critical, and the hon. Member for Glasgow North West has undertaken significant work in this area over a number of years. Thirteen—lucky for us—Back Benchers spoke in today’s debate. I counted 25 Members present at our peak, which is excellent. I spend a lot of time with the hon. Member for Strangford (Jim Shannon) in Westminster Hall, it must be said, but that is a lot of MPs for a Tuesday afternoon, let alone a Thursday afternoon, so that is excellent.
As we have heard, ME, otherwise known as chronic fatigue syndrome, is an incapacitating condition with a plethora of symptoms, primarily characterised by long-term fatigue, chronic pain and post-exertional symptoms of malaise, to name but a few. There are many more and we have heard some excellent testimony of those from Members on behalf of their constituents.
As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people. I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her but she knows who she is and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.
I am surprised that other than the hon. Member for Bristol East (Kerry McCarthy), nobody mentioned “Unrest”. I know it well. Some constituents came to see me to tell me about the film. It had screenings in Winchester and Chandler’s Ford in my constituency, which were oversubscribed—packed to the gunwales—and there was not a dry eye in the house. I pay great tribute to Jennifer and her partner Omar who made that film. I am sure there were times when it gave Jennifer’s life a great purpose, but I am sure there were times when she wanted to say, “Get that bleeping camera out of my life!” There is a touching moment at the very start of the film when she says that when she was a young girl, she want to eat the world “whole”, because she wanted to see it all and do it all. That went to the heart of her great disappointment that she was so sick.
Jennifer set out very clearly and movingly the sheer ups and downs of this condition. For some, it is almost a constant down. I was struck by watching her at the Princeton University reunion day, during the rather surreal procession through the streets by old boys and girls from Princeton. She so enjoyed seeing old friends that day and looked full of life, but within an hour of it finishing she was absolutely poleaxed on the floor, saying that she felt her eyes were being pushed out of her head from the inside. It was horrible to watch.
It was interesting how the film moved around the different wild and crazy treatments that are out there on the internet. If hon. Members google any condition, they will see lots of wild and crazy treatments, but that is particularly the case with ME. One of the saddest things in it, although it covered it well, was the point that my hon. Friend the Member for Cheltenham (Alex Chalk) raised of the suicides resulting from this condition.
Millions Missing was mentioned by many Members, and I see some people wearing t-shirts in the Public Gallery. The hon. Member for Ealing North (Stephen Pound) is right that it has had some bad PR, but it is getting its act together. Millions Missing is an absolutely brilliant way of encapsulating the problem. A number of Members mentioned the shoes; I was particularly moved by the messages on the shoes. They were outside Richmond House, where the Department of Health used to be, as part of the Millions Missing campaign. The mission was to write what you miss; somebody had written on a pair of ballet shoes, “I miss dancing in these shoes.” That was really moving and a human way of putting it. I might touch on the film again a little later.
I assure the hon. Gentleman that I was not implying any absence of PR skills on the part of the advocates and the people who suffer from this debilitating disease; I was anthropomorphising the actual disease itself. I stole the words of the hon. Member for Cheltenham (Alex Chalk) when we pitched this debate to the Backbench Business Committee, because he was not in Westminster Hall at the time.
That is so unlike the hon. Gentleman. Good clarification.
The stigma quite rightly has been mentioned by pretty much everyone who have spoken today. We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times. I have seen a clip of Ricky Gervais in one of his otherwise amusing stage shows, when he says of ME, “Yes, that’s the one where they say I don’t want to go to work today.” Ricky Gervais is a very talented comic, but given that he is quite active on Twitter, perhaps he could retract that and apologise to the ME community today. Perhaps he could put #ME so we can look out for it.
My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong. His intervention was timely and good.
The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer. People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.
That stigma can and does play a part in the development of the co-morbid symptoms of depression and anxiety, particularly for young people—I will come on to them in a minute—who keenly feel the consequences of the resultant social isolation at that moment of their development. As we have heard, suicide is not unheard of. We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it. The hon. Member for Plymouth, Sutton and Devonport (Luke Pollard) mentioned that MND is being talked about, and he is absolutely right. He is a very good communicator, and I think this will probably be one of his next Facebook Live sessions.
He is nodding. It is important that we raise awareness and educate people, including me, about the condition and its impact on people’s lives.
I will now turn to the two issues that have primarily been debated today, research and treatment. On research, the Government invest more than £1.7 billion a year in health research via the National Institute for Health Research and the Medical Research Council through UK Research and Innovation. The NIHR and MRC welcome high-quality applications for research into all aspects of CFS and ME, which would certainly include the biomedical research that the hon. Member for Glasgow North West spoke about in her opening remarks.
Since 2011, the MRC has funded seven projects on CFS/ME totalling £2.62 million, and it is ready to support further applications of the highest scientific quality, which is required to make those scientific breakthroughs. My hon. Friend the Member for North West Norfolk (Sir Henry Bellingham) is no longer in his place, but he spoke about the Norwich Research Park—didn’t he push that a few times?—which sounds very promising. I look forward to hearing more about it, and I feel certain that he will tell me.
The MRC has had an open cross-board highlight notice on ME since 2003. It was updated in 2011 alongside a bespoke funding call in that year. ME research remains an area of high strategic importance for the MRC. Applications that focus on the underpinning mechanisms of ME are encouraged, with priority areas including immune dysregulation—[Interruption.] Sorry, I am distracted by someone shouting about stopping something outside—I think he is saying, “Stop ME!”. The priority areas include pain, improved sub-phenotyping and stratification of ME, and mechanisms of ME in children and young people.
A number of people mentioned the late Baroness Jowell. I was very privileged to meet her. I did so just the once, but I was left in no doubt about her resolve on the issue of brain tumours. Let me say in reference to her and to the research environment that, as my Parliamentary Private Secretary, my hon. Friend the Member for South Suffolk (James Cartlidge), reminded me, that journey started around the time of a Westminster Hall debate. Perhaps that is a good sign.
Our challenge with brain tumour research is the lack of high-quality research proposals that have come forward. The late Baroness Jowell was passionate about stimulating the research community to get that situation changed, and we have latched on to that. That is one of her great legacies. I would hazard a guess that her greatest legacy is yet to be reached, but that is one reason it is important to mention her today.
The NIHR has, since 2011, provided £3.37 million of funding for projects and training on ME. That might not be termed biomedical research, but as with other disorders, given that the cause and mechanisms of the condition are still poorly understood, it is important that we carry out both biomedical research, to further our understanding, and applied health research, to improve the treatment offered to people with ME now and to help to improve their symptoms and quality of life.
The NIHR and the MRC recognise that ME is a debilitating condition and are working with the UK CFS/ME Research Collaborative, which was mentioned towards the end of the debate, and with patient representatives on how best they can support a joined-up approach to encourage high-quality research into this complex disorder. I mentioned that Baroness Jowell is a good example of how to start such research. They hope to be able to update colleagues on those discussions by the end of the year, and I for one will look keenly for that update.
For Members who do not know about that important collaboration, it was set up in 2013 to promote high-quality basic and applied research into ME. The CMRC brings together researchers, major funders and charities, and provides them with a mechanism for working together in a co-ordinated and collaborative way, increasing awareness of ME in the research community—that is so important if we are going to stimulate applications—highlighting priorities for research funding and increasing such funding. Both the NIHR and the MRC sit as observers on the CMRC board.
Everyone who contributed to the debate spoke passionately, but the hon. Member for Ealing North spoke particularly passionately, and I liked his point about humanity. This is a matter of good Christian humanity in many ways.
The Royal College of General Practitioners oversees GP training in England. It provides an online course for GPs and other primary care practitioners that includes an overview of the presentation, diagnosis, assessment and ongoing management of ME. The course highlights common misconceptions about ME and considers the challenges that surround that complex condition for patients, carers and primary care professionals. It is produced as part of the METRIC study, which is funded by the NIHR.
Of course GPs can always know more and learn more, but let me speak up for them for a moment. They are called “general practitioners”. Be a GP for a day—it is incredibly difficult to know everything about everything and to be a master of all. General practice is, though, where most patients with ME are likely to be managed, certainly in the first instance. The condition is identified as a key area of clinical knowledge in the RCGP applied knowledge test content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in England and a key part of GPs’ qualifying exams.
Although I understand hon. Members’ points about raising awareness among medical professionals, and as a result of the debate I will redouble my efforts to do that as part of my role as Minister for primary care, all GPs certainly should be aware of ME, and should maintain their clinical knowledge of it and other conditions, as part of their commitment to continuing professional development. Indeed, I have resolved—I have already sent a note to myself—to send a copy of the report of the debate to Professor Helen Stokes-Lampard, who currently leads the RCGP, and to ask for the college’s latest thinking about this subject.
Before any medical condition can begin to be treated, it must be diagnosed. That goes to the heart of our challenge. As the symptoms of ME often resemble those of many other debilitating illnesses—we heard about Lyme disease—there is no test with which to make an accurate diagnosis. ME, therefore, is not always easy to diagnose, to put it mildly. Diagnosis relies on clinical observation of symptoms by healthcare professionals. We understand that that can be frustrating, to put it mildly, for patients—and, it must be said, for their clinicians.
People with ME should be referred to a specialist service, where care should be based on their needs, on the type, complexity and severity of their symptoms, and on the presence of comorbidities. That decision should be made jointly by the patient and their healthcare professionals. As the shadow Minister said, referral to specialist ME care should be offered within six months of presentation to people with milder symptoms, within three to four months of presentation to people with moderate symptoms, and immediately to people with severe symptoms. Clinicians are responsible for advising patients about available treatment options.
Of course I am aware that access to services for those with severe ME is a big and ongoing issue. Under the Health and Social Care Act 2012, the configuration of services is a matter for local NHS commissioners, who have to be best placed to deliver services for their area. A number of Members referred to the report of the chief medical officer’s independent working group on ME, which was published in 2002. Following that, a central investment programme of £8.5 million was established to address the service gaps across England—I am responsible for the NHS in England. That included the establishment of 13 centres of expertise across the country, 36 multidisciplinary community teams for adults and 11 specialist teams for children and young people, and facilitation of access to advice on clinical management for patients, families and health professionals.
Linked to that—the Department is, of course, now called the Department of Health and Social Care—the vast majority of people with severe ME and their families will come into contact with social care services at some point. The Care Act 2014 requires a local authority to carry out a needs assessment where an adult or carer appears to have care and support needs. The local authority must then decide whether the person has eligible needs by considering the outcomes they want to achieve, their needs, and how those impact on their overall wellbeing. Where a person is assessed as having eligible care and support needs, those must be met by their local authority.
Let me say some more about children and young people, who were mentioned by a number of Members. There is a powerful moment in “Unrest” where a young lady is celebrating her birthday. She says, “I remember my 16th birthday in this bed, and my 17th birthday, and my 18th birthday”—and she goes on through; I think she was celebrating her 22nd birthday in the film. Although access to services was raised, I know that access to education is also a huge issue for children and young people with ME.
All schools have a legal duty to make arrangements to support pupils with a medical condition in school. Guidance to schools states that they should put in place arrangements that show an understanding of how medical conditions affect a pupil’s ability to learn and give parents and young people confidence in the school’s ability to provide effective support for their condition. Children and young people with ME should have an individual healthcare plan, which should normally be drawn up in partnership with the school, healthcare professionals, parents and the young person, and should be tailored to their needs.
Schools and other services should work together to ensure that children and young people with ME receive an education that is flexible and appropriate. That could mean programmes of study that rely on part-time attendance, in combination with alternative provision or home schooling, which was mentioned. Consideration should also be given to how children and young people are integrated back into school after a period of absence, when they are feeling better and, hopefully, more able physically to cope.
A lot was said about NICE guidelines, which are clearly a sensitive topic and a source of much unhappiness among Members and the wider ME community. According to NICE guidelines, recommended treatments for ME include cognitive behavioural therapy and graded exercise therapy. I know that many patients disagree with those treatments, and we heard powerful testimony about that. The NICE guideline is clear that there is no one form of treatment to suit every patient; that the personal needs and preferences of the patient should be taken into account; that doctors should explain that no single strategy will be successful for all patients; and that, in common with all people receiving NHS care, ME patients have the right to refuse or withdraw from any part of their treatment that they do not agree with or they think is doing them harm.
As we heard, the NICE guideline is being updated—a jolly good job, too. NICE will look at the current evidence base, including the PACE trial, which has been debated at length in the House before. Of course, we welcome NICE’s decision to undertake a full review of ME guidelines. Many of the ME charities we have heard about today are registered to take part in the guideline development process, but NICE is the independent expert body responsible for developing robust, evidence-based guidance for the NHS to design services that are in line with the best available evidence, and no one should hide from the evidence. It would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.
The Minister has rightly said that any patient has the right to withdraw from medical treatment. However, when the DWP is saying that patients must undertake graded exercise therapy, and when health insurance companies are saying that they must undertake graded exercise therapy, it puts the patient in a very difficult position.
I fully appreciate that point—the hon. Lady put it on the record very well earlier—which takes us on very neatly to welfare benefits.
The hon. Members who requested the debate also flagged the issue of benefits. I know they would like, and are having, an ongoing conversation with the DWP. I am clearly not a DWP Minister—they wanted a Health Minister to respond to the debate, and that is what they have. The DWP obviously recognises that ME is a real and disabling condition. Entitlement to benefits depends on the disabling effects of the condition, which of course must be taken on an individual basis. When assessing claimants, healthcare professionals are expected to be mindful of the fact that many illnesses—including ME—produce symptoms that vary in intensity over time, and they are instructed not to base their opinion solely on the situation observed at the assessment. The DWP assures me that all healthcare professionals are required to read an evidence-based protocol on ME as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition.
From what I have heard today, Members clearly feel that that is not happening— certainly not in a consistent way. I will take an action from the debate to send a copy of what has been said to the relevant Minister—I believe it is the Minister for Disabled People, Health and Work, my hon. Friend the Member for Truro and Falmouth (Sarah Newton)—at the DWP. However, I encourage members of the all-party group to seek more and continuing engagement with the DWP on this issue. I will certainly follow that up with them.
Once again, I thank the hon. Member for Glasgow North West, who opened the debate, and her colleagues who secured the debate through the Backbench Business Committee for raising the issues of ME research and treatment on behalf of those affected—their constituents and mine. I welcome this and all other opportunities to raise awareness within the House. Ultimately, raising awareness is what we can do, and that can lead to action and real change, as we saw within the brain tumour community.
I thank the ME charities—they are very active in my part of the world, in Hampshire—for their continuing work in this area. What has been fascinating today, as always with debates in my portfolio, is that I have not heard one single person mention their party political colours. There really is no politics in ME, and nor should there be. I want to see us come together at our true, cross-party best to focus on the needs of people with ME and see if we can move the research agenda forward in this area.
I think the hon. Member for Glasgow North West said in her opening remarks that professionals should welcome research, because evidence-based treatment is ultimately the basis of their training. I welcome such research. I echo what has been said, and on the email that she read out earlier—clearly, I have not seen it and have only heard her reporting of it; I think she will give it to me afterwards—I hope that that will be the second apology received as a result of my remarks today. I look forward to being copied into that.
As I said earlier, the NIHR and MRC are speaking to the UK CFS/ME Research Collaborative and patient representatives about how they can best support a joined-up approach to high-quality research into this complex disorder. I hope they will update colleagues about those discussions later in the year. I will end with what Jennifer said right at the end of “Unrest”:
“every book I read…said, ‘when you fall ill, either you...find the cure or die trying.’ It always ends in triumph or tragedy. But that’s not my story—at least not yet.”
That is how she put it.
I thank hon. Members once again—Thursday afternoon is not an easy time to stay behind for a debate, and I really appreciate the fact that they have done so. I also appreciate the great support from the people in the Public Gallery, many of whom are living with ME. It has been tough enough for us to sit here for three hours, so it must have been a hard slog for them. I hope they do not feel the impact of the debate too badly over the next few days.
I have been following the debate on Twitter, and it has been interesting to see the messages of support coming in for individual Members. People really are watching and were interested and encouraged by what they heard. Although we are talking about treatment and diagnosis in the UK, the repercussions are far wider. Messages of support have been coming in from Norway, Canada, the United States and right across Europe. ME affects people worldwide, and I hope the debate has given them some hope.
The debate was about more than just raising awareness. Members asked specific questions, and I am glad the Minister said that he would work with the DWP to draw up guidelines for people with ME. We will all watch that with interest, and perhaps some parliamentary questions will go in as a result.
I was also a bit disappointed. The Minister, who is a compassionate person, talked about funding, and I think he said that the Medical Research Council is putting £2.6 million into ME research. Unfortunately, that is not for biomedical research—or little of it is. I quickly googled and found that a new research programme is taking place at Bath University, but, once again, it is at the department of psychology. That is where we have the trouble: it is not a psychology department that needs to be doing research, but a medicine or biomedical sciences department.
Members have spoken passionately on the ME community’s behalf, and once again I thank everyone here this afternoon. I do not see this as the end. The fight for people with ME both here and across the world continues.
Question put and agreed to.
That this House has considered myalgic encephalomyelitis treatment and research.