In memory of Maeve Boothby O’Neill
b.1994 ME. 2008 d. 2021
Maeve died too young. ME did not kill her. Medical neglect did. She was born a scholar and, by the time she died, she knew more about Myalgic Encephalomyelitis than all the clinicians she ever met put together. That includes England’s so-called experts. Maeve, the born scholar with her love of literature, Biology, languages, ballet, economics, history, musical theatre, international relations, politics, knitting – the list goes on – had to become her own physician. Anyone who knows about the discredited, government funded PACE trial knows that ME has been denied biomedical research funding, leaving patients with a lower quality of life than people living with lung cancer or kidney failure – and no explanation of the disease process. Nobel prize nominees are working to understand the bio-mechanism of ME unpaid, motivated purely by learning how to stop the damage being done. Maeve was ambitious in her efforts. She was also exceptionally able. How to live in a world where this is how our best hopes are treated is what I am trying to learn from her death.
Having an outstanding scholar for a daughter was a novelty for me. I had hated school, not because I did not like to learn but because what we were taught had next to no relevance to the life my family expected me to live. In reaction, I wanted my children to be independent, unhindered by family tradition, and not to feel compelled to please me in any way, other than being considerate to others and realising their own potential. Maeve did what every child does and tried to please her parents but that she also found every subject she was ever asked to learn more absorbing than typical childhood fun. This made it too easy for her to push through ME symptoms when they began slowly to emerge, shortly after her thirteenth birthday.
Maeve learnt everything so quickly, she was labelled ‘gifted and talented’ by her teachers when she was five. What gifted and talented meant was not explained to me. As it turned out, I didn’t have any more children of my own to compare her with, so I just had to guess. Maeve was my only, very much wanted, delightful, child. Walking at 10 months – barely bothering with crawling, naming things soon after. At 18 months, when I said, “I’ll just finish the washing up and then we’ll go to the library,” she understood what I had meant. I was at the sink with my back to her. When I turned around she had gathered her library books together and placed them in a neat pile on the bottom stair. We were in London then, in the basement kitchen of what was my dream house. Surprised, I thought, “Goodness, I wonder what else I’ve said out loud that perhaps I shouldn’t?”
As a baby, going to sleep was not something Maeve ever wanted to do. She was a bottomless well of irrepressible dynamism. As the newly walking toddler she investigated every gateway and garden path in the streets around our house. When she was so tired she was falling over from exhaustion, she cried more loudly about going to bed than about anything else. At night we took it in turns to sing her to sleep, which could take hours. Her dad made up a song for her, Baby Maeve, baby Maeve, so big and so bold and so brave.
Her health was never a worry to me; she was never ill. I needed sleep, she didn’t seem to. Being the youngest in her year group at school, keen to learn and recognised academically, her social isolation did worry me. My separation from her father on her fifth birthday compounded that worry. It broke her heart and while it was unquestionably a bad marriage better ended, our divorce could never be good for Maeve. She didn’t have any siblings to learn from, play and fight with growing up. Just the two of us living in a small town on Dartmoor offered few opportunities to socialise. The natural beauty of the moor accentuated our loneliness. After she died and the inquest closed I moved back to London where I belong and Maeve would have thrived.
It took until she was 17 before Maeve found a peer group where she belonged, but ME was too well established by then. The diagnosis was confirmed after a nine month wait at our nearest NICE Centre of Excellence for CFS (Chronic Fatigue Syndrome) at Frenchay hospital in Bristol, but without proper medical guidance, we had no idea how to manage it.
ME entered our lives by stealth, moving in with a mild infection and steadily destroying everything except Maeve’s talent and our love for each other. Maeve had been seen by countless doctors as a teenager. None of them diagnosed ME. They could see she did not meet the NHS treatment protocol for CFS: Graded Exercise Therapy and Cognitive Behavioural Therapy. She was a highly motivated, extremely reasonable, academically high achiever, with unique ambitions. Why would they refer her to that service? She never experienced ‘’flu like symptoms’ or ‘brain fog’. Her only illness in childhood was being unable to participate in PE because she would literally fall over when she tried, which was why we went to the doctor. As this grew steadily worse, and numerous doctors told us it was ‘normal for a girl of her age’, her PE teachers asked her to sit out of their lessons. Maeve hated competitions – she wouldn’t even tell her classmates what her exam results were because of the inherent competition in grading – so there were no complaints.
In the mild stages of the disease, Maeve’s only ME symptom other than feeling tired all the time was headaches that could last for weeks. None of that was normal to me, but it didn’t impair Maeve’s performance at school so nobody cared. Except me. I knew there was something wrong. We were used to being marginalised as a single parent family with only one child. Something was being missed but I had no confidence in my own education to begin to know what. I knew no other relatives with poor health in childhood. I was on my own, surrounded by people more interested in their animals or spiritual growth than my daughter’s physical health. Child contact arrangements with my estranged husband had caused more than enough distress for me to think of negotiating a second marriage. I focussed instead on supporting Maeve’s development and our financial security by changing career. It was too easy for mild ME symptoms to be dismissed or psychologised in 2009; I don’t think it would be any different now.
Maeve always loved books, from the minute she could get out of bed by herself she would wake me with a book to be read to her. Once she could read to herself bedtime songs became bedtime stories (and I got to sleep in a bit later than 5am). J. K Rowling, Philip Pullman, A. A Milne, E Nesbit, C. S Lewis were read and re read together. She began writing with a community theatre quite soon after her father left. She had a great sense of rhythm and humour; they were like an accompanying hum to her presence in the world. She was so quick witted, without being nasty as so much comedy can be, she often made me laugh out loud. Even when she was dying she laughed about it, and cried, of course. She did not want to die. She had so much to live for and so much to give. I miss that hum. That witty vibration brimming with kindness and the breadth of knowledge is irreplaceable.
The play she wrote as a seven-year-old made the audience laugh out loud, sweetly alluding to the children’s literature she knew so well, but we never expected her to write for a living. In 2011 she wrote to me from her dad’s house, “I will be very successful in New York, working for the UN or something, then I will pay you back with free passage and a Granny flat. Signed (in blood) Mae”. When you consider how she opted for a degree in Russian with – she hoped – Hebrew (not widely offered) it’s not as wild as it reads. Her teachers certainly thought she could do anything she wanted. Her difficulty was in choosing what. Was that ‘brain fog’ for someone like Maeve? I don’t think so. She was so mentally agile and quick, she could demolish a silly argument in seconds simply with a witty comment. Imagine if ME were treatable what she could be doing for international relations with Jews and Russians now; with her gift for languages, her dislike of competition, her sense of humour in the darkest of hours.
As the ME progressed from mild to moderate so Maeve had to drop singing, piano and ballet. By the time she finally got a diagnosis she had pushed through to complete her A Levels and had unconditional offers from some good universities. The ME was so bad by then she told me, “I am afraid if I stop now I will never start again”. I had put my fledgling business on hold to support her through her last year of compulsory education and public examinations. The medical advice we were given at Frenchay was for her to establish an asymptomatic baseline and then begin to increase activity by 10%. Maeve’s baseline was 30 minutes in any 24 hours. 10% was a laughable intervention. Back in Devon the NHS specialist CFS service did things differently, trying to discharge her for having a baseline so low she could not attend their clinic. She was only 18 so I complained; this was not the way to treat a young adult newly diagnosed with a devastating illness that had progressed from mild to severe under the knowing gaze of health services. They agreed with me. They had never seen anyone so unwell, they said. Little wonder, I thought, if you discharge them because they are too unwell to travel.
Maeve was forced to reduce her activities by disease progression. If she had been given current medical advice, and medical treatment for orthostatic intolerance, as soon as ME began to emerge she would have known to reduce her activities to prevent disease progression. With this advice she may well have been with us still. Yet the NHS in England still fails to tell people with ME that they must stop all activity, rest deeply until they are symptom free, and then pace everything they do to stop the symptoms from returning. Only if and when they are symptom free should they consider rebuilding their strength. A good Physiotherapist will know what the anaerobic threshold is. If you have ME, as one what reversing the anaerobic threshold would mean to a body. Then tell them that is what is happening to you.
My little business died with Maeve’s hopes of going to university. She was never well enough to leave home again. We became much closer than most mothers and daughters do at that stage in life because Maeve needed support with everything. She loved her independence but she could not cook or do the laundry or go to the post office. She learnt to rest and pace, but she never could stop, not really. She needed an intellectual stretch like a dancer needs movement. As the ME stealthily progressed to very severe, Maeve filled her mind with activities that are thrashing Nobel prize nominees. She learnt that ME is an acquired metabolic disorder that the medical specialism is not equipped to understand. She learnt to accept stories were something she could always write and began a series of novels set in 1920s Dartmoor under the pseudonym Maeve Owen, researched for the finest of historical details. She learnt Yoga Nidra and meditation. She kept up with current affairs in select podcasts. Even as she was dying she wanted to know the name of the drug we had fought for as ‘palliative’ to ease her pain. Given less than two days before she died, her knowledge of chemistry and biology furnished her understanding of its action – which was to prevent her from being able to speak. Whose pain is killed by silencing the sufferer? Knowing what I now do, I have nothing but pity for what the NHS has become.
Not being able to travel meant the only paid work Maeve ever had was for a piece she wrote anonymously for the London Review of Books. Her premature death was entirely preventable, her loss not only mine. She wanted to be an asset to the world and she would have been. She didn’t want to be remembered for being unwell – who would – and for me, as one of the too few people who had the privilege of knowing her, she never lost her dynamism. What I remember about Maeve is not the illness, despite it robbing her of everything and me of her, but her kindness, her generosity and her wit. For everyone with ME well enough to read this, please remember: you too are much, much more than this illness. When every day is characterised by so many symptoms, none of which respond to conventional or alternative medicine, and not enough energy to move, please remember your body is working the best it can and you are more than the illness it is fighting for you. Stop. Rest. Pace.