ME: Treatment and Research

Michelle Donelan Excerpts

Thursday 21st June 2018 Westminster Hall

[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.

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[Dr David Drew (Stroud) (Lab/Co-op)]

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.

[Michelle Donelan]

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.

[Dr Drew]

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.

--- Later in debate ---

[Kerry McCarthy (Bristol East) (Lab)]

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 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.

[Michelle Donelan]

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?

[Kerry McCarthy]

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.