Severe ME patient Millie’s family tells the Canary the situation is ‘heartbreaking’

A young woman who lives with severe ME is still being dangerously neglected by an NHS hospital – despite interventions, media coverage, a petition, and social media uproar. The situation is such that her family has told the Canary they are concerned she is “declining daily” – and that the situation is “heartbreaking”.

What is ME?

Myalgic encephalomyelitis (ME) is a chronic disease that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Now, the NHS is neglecting yet another severe ME patient.

Millie: at severe risk under the NHS

Millie is 18 years old and lives with severe ME. As the petition for her states:

She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.

Millie agreed to come into the Royal Lancaster Infirmary on 30th January 2024 after 4 paramedics carefully helped her down from her bedroom in a scoop to the ambulance. She and her family were hoping that the stay would be short and a feeding tube given as soon as possible and to get Millie back home where she is able to manage her sensory hypersensitivity well.

Since Millie has been in hospital, it has become very clear that that hospital environment is making Millie’s severe ME so much worse, due to the stimulating environment, all the tests and the complete lack of understanding of severe ME, and horrifically the hospital has made the unacceptable decision of sectioning Millie.

Since then, things have changed slightly. Chronic illness communities on social media got involved. Doctors who are experts in ME once again spoke with the hospital. The petition passed 10,000 signatures. Eventually, doctors removed the sectioning under the Mental Health Act they forced on Millie.

Millie must be at home

However, things for her are still not good.

Royal Lancaster Infirmary are still performing nasogastric (NG) feeding at an angle of 30-45 degrees – which simply makes her more unwell. This is because Millie cannot tolerate this due to her severe POTS (postural orthostatic tachycardia syndrome).

Her family still want her to be at home with a percutaneous endoscopic gastrostomy (PEG) feeding tube. This would be much better for Millie since the hospital’s refusal to completely follow National Institute for Clinical Excellence (NICE) guidelines on severe ME is just making her worse.

The petition update on Millie from 4 March says:

Millie is declining further in hospital and has communicated she can only stand a few more days and needs to go home extremely urgently. She can no longer get out of bed at all and even turning over in bed is becoming a big struggle

Millie still doesn’t have a feeding tube in that she can go home with. We are getting very worried.

‘It’s heartbreaking for the family’

Millie’s family told the Canary:

We have had to watch Millie keep declining daily as she is put through many interactions we believe are not in keeping with the ME/CFS guidelines on protecting her from detrimental Post Exertional Malaise (PEM) which can permanently lower her baseline.

These include not adapting hospital protocols for an ME patient regarding bloods, observations, and washings; sectioning her; repeating stressful tests; not pacing treatments; suggesting inappropriate treatments etc. many of which are not helping solve the main reason she came to hospital to get a feeding tube and return home to the quiet environment essential for ME/CFS patients.

It’s heartbreaking for the whole family.

You can sign Millie’s petition here. You can also read the Royal Lancaster Infirmary’s response to Canary questions here.

Sadly, Millie is not the first patient the NHS has treated like this – as you can read here. While doctors have changed some of their approach to her care, overall the situation for Millie and her family is still diabolical, and the NHS urgently needs to change its approach – not just for Millie, but for all ME patients.

Featured image supplied