NHS still failing patients with Severe ME

The tragic death of Maeve Boothby O'Neill 1994-2021

The recent inquest into the tragic death of Maeve Boothby O’Neill at the age of 27 revealed some shocking details of how she was treated by the Royal Devon and Exeter NHS hospital.

The inquest coroner concluded yesterday that Maeve had died from malnutrition as a result of ME (Myalgic Encephalomyelitis). She drew attention to a number of failures in Maeve’s treatment, but was unable to say if these caused her death.

A far more disturbing picture emerged from evidence presented during the inquest by Maeve’s parents, and by the ME expert they hired. 

Maeve’s mother and carer, Sarah Boothby, described how in the year she died Maeve was unable to sit up, hold a cup, or chew food. She needed to be in hospital to be fed by tube, but the hospital regime did not allow the pacing that she needed to manage her very severe ME. Maeve died when she was discharged from hospital without the tube feeding at home that she needed being made available.

Maeve’s father, Times journalist Sean O’Neill, contrasted his own exemplary treatment for cancer with the lack of treatment for Maeve. “It seems a harsh thing to say but she would have been better off in the hands of the NHS if she had cancer, And I say this as someone who is living with cancer … In my view it was deeply discriminatory. Had Maeve presented with those symptoms but with a diagnosis other than ME, I believe she would have been treated very differently.”

The testimony submitted by Dr William Weir, a retired NHS consultant specialising in ME who was hired by Maeve’s parents, was damning:

“It would appear that a considerable portion of the staff at the RD&E, including some consultants, still hold the outdated understanding that ME/CFS has psychological causes. It is also apparent from the way Maeve was treated during her last admission that her illness was regarded by some of the RD&E staff as her fault and that her immobility was self inflicted.”

(Dr William Weir, letter to CEO of Royal Devon University Healthcare NHS Foundation, 9 Sep 2021)

The inquest also heard Maeve’s own words, written a few months before she died. She described how frightening it is to realise that the only therapies on offer either don’t work, or make your condition worse. “I know of nobody who has benefitted from GET (Graded Exercise Therapy)”, she wrote. “I know a lot of severely affected people whose decline was precipitated by it  …. I need physicians to work with me, and not be hamstrung by guidance which is actively unhelpful.” 

There is much in Maeve’s experience that reminded me of what Angela, my late wife, went through, although in reverse order.

Maeve’s ME started in mild form at the age of thirteen, and deteriorated over the next five years, during which time she was told by her paediatrician it was all in her mind. She was formally diagnosed with ME at 17, and her disability became progressively more severe over the next 10 years, before she died at age 27.

Angela’s ME appeared suddenly at the age of 54, in the same month that Maeve was born. Her ME reached the very severe level within weeks. She was in an NHS hospital for 3 months, and remained bed bound at home for the next five years, when, thanks largely to careful pacing, her ME slowly and unevenly started to become less severe.

Angela had been fortunate to have been in a hospital with a consultant who accepted that ME was a physical illness - Dr Weir, the same consultant who was employed by Maeve’s parents to try and get better help for Maeve at the Royal Devon and Exeter hospital. Angela was also fortunate that the main hospital treatment she received was from a physiotherapist who understood the need for pacing, and who could give gentle massage to reduce the risk of muscle wastage.

Almost all the nursing staff, however, were fully signed up to the ‘all in the mind’ dogma. Angela, unlike Maeve, was just about able to chew. But she needed help sitting up and lifting food to her mouth. Many of the nurses would not give this help - one of them would deliberately put a plate of food or glass of water out of her reach, claiming that this was the incentive Angela needed to regain her strength. Every day I had to make sure I was by her bed at the time when the evening meal arrived, to help her eat it. The quality of the hospital food was so poor that back home I had to liquidise as many nutritional ingredients as I could source, to warm into a soup that either I or our son could take over to the hospital each lunchtime for her to drink. Angela believed it was these soups that saved her life. Coercive control by the nursing staff was so bad that Angela made me promise not to complain about how she was being treated - she was convinced that if I said anything they would take it out on her once I left.

That was three decades ago. It has been quite a shock for me, reading the evidence presented to Maeve's inquest, to realise how little has changed since then. 

I was touched, though, to learn from Sarah’s inquest statement that Maeve was a “compelling jazz singer at fifteen years old”. When the severity of Angela’s ME had reduced sufficiently for her to be able to sing, she discovered that she had a rich jazz voice, and was able to make a CD of jazz standards at the age of 78. I wrote about Angela finding her voice here.

The inquest statement by Sarah Boothby (Maeve’s mother) is here.

The inquest statement by Sean O’Neill (Maeve’s father) is here.

Letters from consultant Dr William Weir to the Royal Devon and Exeter Hospital, expressing concern about Maeve’s treatment, are here.

I have written, here, about the appalling contribution of psychologists to the mistreatment of ME sufferers by the NHS. And about the shameful role of some feminists in denying the physical reality of ME, and how this related to Angela’s experience, here.