ME: Treatment and Research

Carol Monaghan Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan (Glasgow North West) (SNP)]

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.

[Mr Jim Cunningham (Coventry South) (Lab)]

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?

[Carol Monaghan]

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.

[Mark Tami (Alyn and Deeside) (Lab)]

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 the hon. Lady agree the benefits system must look at the longer term picture, rather than the short term?

[Carol Monaghan]

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.

[Jeremy Quin (Horsham) (Con)]

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.

[Carol Monaghan]

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 trial 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.”

[Robert Courts (Witney) (Con)]

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?

[Carol Monaghan]

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 bedbound as a result of this programme.

[Patrick Grady (Glasgow North) (SNP)]

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?

[Carol Monaghan]

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.

[Liz McInnes (Heywood and Middleton) (Lab)]

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.

[Carol Monaghan]

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.’”

[Andrew Selous (South West Bedfordshire) (Con)]

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.

[Carol Monaghan]

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.

[Michelle Donelan (Chippenham) (Con)]

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?

[Carol Monaghan]

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.

[Sir Henry Bellingham (North West Norfolk) (Con)]

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.

[Carol Monaghan]

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?

[Scott Mann (North Cornwall) (Con)]

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 the review by the National Institute for Health and Care Excellence?

[Carol Monaghan]

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.

[Sir Edward Davey (Kingston and Surbiton) (LD)]

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?

[Carol Monaghan]

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.

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[Jim Shannon (Strangford) (DUP)]

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.

[Carol Monaghan]

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.

[Jim Shannon]

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, the 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.

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[Kerry McCarthy]

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 and 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.

[Carol Monaghan]

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.

[Kerry McCarthy]

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.

[Stephen Kerr (Stirling) (Con)]

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.

[Carol Monaghan]

Does the hon. Gentleman share my concern about the aspect of “medically unexplained symptoms” diverting ME down the psychological path?

[Stephen Kerr]

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.

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[Steve Brine]

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 co-morbidities. 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.

[Carol Monaghan]

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.

[Steve Brine]

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.

[Carol Monaghan]

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.

Resolved,

That this House has considered myalgic encephalomyelitis treatment and research.