A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS

I spoke with Sarah Boothby over zoom on 19 May, 2023. Our discussion was wide-ranging, and I’ve cut down and rearranged what was said for length and clarity. Maeve’s story is profoundly upsetting, and discretion is advised.

How old was Maeve when she first got ill with ME? How did it affect her life?

Maeve was 12 when we both had the same virus in the spring of 2006. I recovered fully. Maeve slowly developed ME.

She was an A* student. A natural scholar who loved to learn and did not miss school, but she was given a reduced timetable and they asked her to sit out of PE lessons because she would collapse. By the time the diagnosis was confirmed she had left school with three A Levels and five AS Levels.

She could not progress to university but continued to teach herself -Hebrew, Irish, Italian, economics, philosophy, creative writing and everything she could learn about the biomechanisms of ME until the illness became very severe in 2020.

People with ME often face a long and difficult journey to get a diagnosis. Was that the case for Maeve?

Yes. Once she got ill she began seeing a paediatrician, who told her there was nothing wrong with her. That went on for two years. Then we moved two counties to get a diagnosis from an NHS centre of excellence in Bristol, and had to wait nine months for confirmation of the diagnosis.

You moved house in order to receive better medical care for Maeve?

Yes, there was nothing for her where we were. As she became more severe she saw countless healthcare professionals in hospital and in the community after needing more help to live than her mum alone could provide.

Over time Maeve’s ME became very severe. What did life with severe ME look like for her?

She had to rest after every activity. When she got washed, she had to lie down afterwards. Then she’d get dressed, then lie down again. Eat a meal, lie down. She couldn’t see her friends and family. She couldn’t leave the house without somebody to help her into and out of the vehicle. She had to pace medical appointments to avoid PEM. You can’t travel. You only have thirty minutes in a day to do anything.

When her ME became very severe Maeve could not eat, lift a cup to her lips, stand, reposition in bed or turn her own head. At the end, by the time they’d finished with her, the only movements that she could make were: she could blink, and she could whisper, and she could still swallow.

What types of doctors did Maeve see over the years, and did they have a good knowledge of ME/CFS?

Maeve changed GPs many times – none of them had seen anyone so ill with ME and none of them knew what to do to help her. They thought they knew about ME/CFS but didn’t – they believed it was psychological. One told her it was her brain telling her things that were not true. Her penultimate GP told me she knew about ME patients threatening research medics and believed this was why there was no research into the disease.^{Note 1} I asked her if she found us threatening. She made no reply but firmly believed Maeve was mentally ill and manipulative.

All the NHS specialist CFS^{Note 2} services in Bristol, Bath and Devon prescribed GET^{Note 3} and CBT^{Note 4}. They realized she could not benefit from either but they did not know what else to do.

She was on a waiting list for five years to see a specialist in ME, privately. But even he didn’t realize how seriously ill Maeve was.

Maeve had several hospital stays. Why did she go to hospital?

She went to hospital because I could not get enough calories into her. So I was counting the calories that she was taking and she was trying, she was really hungry, this is what really peeves me off about the NHS, is that they see a young woman who can’t eat and they assume it’s an eating disorder, even though the person is telling them how hungry she is. “I’m really hungry and I really want to eat.” There is nothing in there that is mentally disordered about food. Absolutely nothing, and yet they still would not treat her.

So she was really eager to get the nutrition she needed.

Absolutely.

To be really clear, why was she not able to take in enough nutrition?

She became unable to chew. She was only able to have liquidized food, which had to be watered down so she could swallow it, and she wasn’t able to take in enough calories to maintain life.

Being in hospital can cause people with severe ME a lot of pain and discomfort, and they often become sicker due to noise, light, or chemical sensitivities. Was this the case for Maeve? Was she comfortable in hospital?

Yes. She was very uncomfortable and deteriorated on the ward each time. I was allowed to stay on the ward with her for second and third admissions. I was there every day from 10am-9pm. Staff resented my presence but if I didn’t stay, they did not know she needed a darkened room, quiet and could not eat despite being ravenously hungry. They were very, very unkind without knowing it; they saw her in a crash^{Note 5} and thought she was asleep. They ignored her cries of pain every time we turned her (she was doubly incontinent by her second hospital admission). They did not monitor her fluids or her nutritional intake.

Did the hospital doctors and nurses have a good understanding of ME?

None. They didn’t understand that she was severely ill.

The hospital refused to fit her with an NG tube. This went on for weeks. We spent a lot of time worrying about her ability to swallow, and saying to them when they discharge her to my sole care, what happens if the swallow goes? Well then you’ll have to come in. Ok, and how do we do that? Well you’ll come in through A&E. And it’s like, no, she cannot come in through A&E, look how severe she is.

For how long had Maeve been getting inadequate nutrition at this point?

For months.

So Maeve went to hospital needing nutrition, she didn’t get it, and she was sent home. Then what?

She was prescribed ‘build-up’ drinks, high-calorie drinks that you can only get on prescription, but she wasn’t prescribed them in sufficient quantity, only 900 calories per day.

And so these were prescribed to her, but they didn’t prescribe enough, because they didn’t believe that she couldn’t eat, they thought she wouldn’t eat. So they gave her 900 calories per day, and sent her home saying, you know, she’s going to get better, you’re going to have rehab.

At home she had health care professionals, physiotherapists and occupational therapists, district nurses in principle but not in practice.

What did they say about her malnutrition problems?

They said she’s not getting enough calories. (Laughs).

So they understood this. But the doctor who was in charge of prescribing these build-up drinks…

Well that’s the trouble, this is where we enter into a Kafkaesque world, there was no doctor in charge. Because ME doesn’t exist to them. Severe ME is not recognized by the NHS.

What prompted her second hospital admission?

She could no longer manage the liquidized diet I had been giving her. All she could manage was taking plenty of fluids which I was supplementing by adding dextrose to her water and Floradix liquid iron for vitamins and minerals.

The hospital discharged her with too few calories in their prescribed treatment. The community dietician told me it was a ‘failed admission’. He wanted us to return via A&E. I refused to do this. Maeve was too unwell to do anything for herself. She had improved since coming home. I consulted privately with two registered dieticians – independently of each other. They both agreed she could be tube fed at home with a simple, reversible procedure (PEG). I thought this had been agreed when she was admitted for the third time.

That brings us to the third hospital admission.

I thought she would have a PEG procedure. Instead five weeks passed before doctors attempted to insert a nasogastric tube, and during this time Maeve’s condition deteriorated.

The tube was inserted but the effort to bolus three times as much nutrition as she had taken orally was more than she could manage. She crashed^{Note 5} for days after each attempt. They would not attempt tube feeding with her lying flat. Being elevated to thirty degrees contributed to the days of crash, during which time she could take nothing. Her fluid intake was already dangerously low but because her kidney function was good they ignored my pleas to consider the effect this was having.

They did not give a reason for failing to consider other ways of providing nutrition but flatly refused throughout, even as Maeve was dying at home. The dietician she was under told us she was the only person doing TPN and because Maeve’s digestive tract was functional, TPN would not be considered. I hope she will be a witness at the inquest.

How much time passed between Maeve returning home from her third hospital stay, and her death?

Approximately six weeks.

In your opinion, what might have been the cause of Maeve’s death?

Medical neglect of very severe ME. Institutional neglect, including and especially from social care.

Did the hospital decide on their own that there would be an inquest, or did you have to push for it?

I asked for it. There was no obstacle to opening an inquest: Maeve did not want to die and nobody believes ME can kill. Concluding the inquest is another matter.

What do you think or hope will be the result of the inquest?

I hope the inquest will be heard under Article 2: the right to life.^{Note 6} This will add weight to any recommendation the coroner wishes to make about the prevention of future deaths. A judicial review of treatment may then be used to oblige the NHS to act in the best interests of ME patients.

Notes

Note 1. The GP was probably thinking of a couple of news reports that appeared in 2019, such as the Guardian article ME and the perils of internet activism and the Reuters report Online activists are silencing us, scientists say, in which psychiatrist Michael Sharpe claimed that he had been on the receiving end of abuse from ME sufferers and their advocates. It is worth noting that Sharpe considers Freedom of Information requests, parliamentary debates, and allegations by MPs of fraudulent research, to be forms of abuse which ‘silence’ him and his colleagues – but many would consider these to be normal and healthy contributions to democratic debate. It’s also worth noting that while Sharpe claims to have received thousands of abusive emails, the only evidence of abuse he has shown publicly consists of two insulting tweets.

Note 2. CFS is chronic fatigue syndrome. CFS is sometimes considered to be the same as myalgic encephalomyelitis (ME); however CFS is a term which prior to 2021 had a rather vague definition, and patients who had chronic fatigue for all sorts of reasons could be diagnosed with it. The updated 2021 NICE guidance uses the term ME/CFS and tightens up the diagnostic criteria to require four main symptoms: fatigue, post-exertional malaise, cognitive dysfunction, and unrefreshing sleep. ME/CFS is now the preferred medical term, while patient groups often prefer ME.

Note 3. GET is graded exercise therapy, a program of exercise which gradually increases in intensity. In the past GET was widely prescribed as a curative treatment for ME/CFS, but it is now recognized that this type of therapy can be harmful to people with the condition, and can even lead to a permanent worsening of illness severity, due to these patients’ unique pathophysiological response to exercise. The 2021 NICE guidance on ME/CFS states:

1.11.14 Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

Note 4. In the past cognitive behavioural therapy (CBT) has been recommended as a curative treatment ME/CFS. However during the development of the new guidance NICE reviewed the evidence for this, and found it to be of poor or very poor quality. Section 1.12.28 of the NICE guidance includes this note:

Box 5 Cognitive behavioural therapy

The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.

Note 5. ‘Crash’ means a period of post-exertional malaise, which brings increased illness severity and reduced ability to function.

Note 6. This refers to Article 2 of the Human Rights Act 1998.