Russell Fleming, ME Association Content Manager, 22nd June, 2018.
Following yesterday’s landmark three-hour debate led by Carol Monaghan, MP, in Westminster Hall on myalgic encephalomyelitis, an official transcript was produced that enables us to read exactly what Steve Brine, the Minister for Health and Social Care, had to say in response to the issues that were raised.
You can still watch and even download the video of the debate, and the ME Association will be publishing the press release we produced by way of summary of the proceedings later today. We will also aim to publish tomorrow, a further press release with comment from Dr Charles Shepherd, and we will hear from Helen Hyland – our fundraising manager – whose personal story was read out by her MP, Stephen Kerr.
The debate received wide cross-party support, and at it’s peak, twenty-five MPs were present, with thirteen making contributions. There were also several people affected by M.E. at the meeting. The number of MPs in attendance was seen by all concerned to underline the importance of the debate, and the pressing need for change.
The Minister spoke for approximately 24 minutes, and his formal response was followed by a short speech from Carol Monaghan, which closed the debate at 4.17pm.
“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.
M.E. is an incapacitating condition with a plethora of symptoms
“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.
M.E. can lead to almost no life
“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.
Praise for M.E. documentary Unrest…
“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 wanted 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.
…and for Millions Missing demonstrations
“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.
Stephen Pound commented:
“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 surrounding M.E.
“The stigma quite rightly has been mentioned by pretty much everyone who has 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.
Minister is in no doubt as to the legitimacy of M.E.
“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.
- £2.62 million in biomedical research since 2011
“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.
- £3.37 million in applied health research since 2011
“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.
- CMRC, MRC and NIHR working on new approach
“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.
GP training and medical education: online course for M.E.
“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.
- Key area of knowledge
“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.
Diagnosis and treatment
“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.
- NHS specialist services for M.E.
“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.
- Severe M.E.
“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.
- Report to chief medical officer on M.E. (2002)
“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.
Social care services
“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.
Children and young people with M.E.
“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.
- Healthcare plan
“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.
- Flexible and appropriate education
“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.
The NICE clinical guideline on ME/CFS
“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.
- Right to refuse treatment
“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.
- Full review welcomed… with a caveat…
“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.
Carol Monaghan commented:
“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.
- Assessments should not be based solely on appearance at interview
“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.
- Future engagement with DWP
“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.
- No politics in M.E.
“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.
- Research: CMRC, MRC and NIHR
“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.
Social media support for Members
“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.
More than just raising awareness
“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.
Disappointed about research
“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.”