Doctors held ‘outdated’ views about ME, inquest into sufferer’s death hears

A hospital treating a young woman with chronic fatigue was warned a month before she died about the “dogma” and “outdated” views some doctors held about the debilitating condition, an inquest has heard.

Dr Willy Weir, a retired NHS consultant and expert in myalgic encephalomyelitis (ME), said he urged bosses at the Royal Devon and Exeter Hospital (RD&E) to readmit Maeve Boothby-O’Neill for life-saving treatment.

The 27-year-old died at home in Exeter in October 2021 having suffered with the illness for the previous decade.

The inquest in Exeter heard Miss Boothby-O’Neill had been admitted to the hospital three times that year for treatment for malnutrition.

On the first occasion, in March, she was sent home the same day.

She was admitted for the second time in May and discharged a few weeks later with medics content about her nutritional intake.

In June, she wrote a heartfelt note to her GP begging for help with feeding - saying she was hungry but was unable to eat.

“I have been unable to sit up or chew since March and the only person helping me eat is my mum. I cannot get enough calories from a syringe," she wrote.

“Please help me get enough food to live.”

As she continued to worsen, she was readmitted in July to the eating disorder ward but later sent home.

The hearing is focusing on the last few months of Miss Boothby-O’Neill’s life by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up. She was also unable to read, watch TV or engage in conversations.

Dr Weir told the hearing he had written to the chief executive of the hospital on 9 September expressing his concerns about her case and the “outdated” views some doctors held about ME.

“Consequently, patients with this condition have frequently been regarded as perversely inactive without any regard for the possibility that their inactivity is not due to deliberately perverse behaviour,” he wrote.

“This can lead to completely inappropriate management of someone genuinely severely affected by a condition with demonstrable organic pathology.

“A further point I wish to make is that it would appear a considerable proportion of the staff at the RD&E, including some consultants, still hold an outdated understanding that ME/CFS (chronic fatigue syndrome) has psychological causes.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 hospital staff as her fault and her immobility was self-inflicted.

“Not unreasonably she is reluctant to be readmitted to the hospital despite her precarious physical state.

“At the same time, you will need to tackle head on the dogma concerning the cause of ME/CFS that some colleagues are still perversely adhering to.”

Dr Weir also urged the hospital to readmit Miss Boothby-O’Neill for total parenteral nutrition feeding.

“I understand now from speaking to her father that her nutritional status continues to be seriously compromised – a situation which is potentially life-threatening,” he wrote.

“I have experience of similar cases leading to death and Maeve’s current clinical status shows all the initial hallmarks of this.

“I am fully supportive of this approach, and I am not exaggerating the issue when I say this may well save Maeve’s life.”

In hospital Miss Boothby-O’Neill was fed for a time through a nasogastric tube but due to vomiting it was removed.

Dr Weir said had he been responsible for her care he would have considered feeding her directly into the intestine, and by increasing her blood volume her movement would have improved.

The inquest heard Dr Weir had first met her in March 2021 by which time she was confined to bed and had difficulty eating and drinking.

He said in the absence of a “magic bullet” treatment for ME, she faced a “long struggle” to recover as effective treatments were several years away from development.

“One of the curious historical facts of this illness, although I began to be interested in it in 1987, I never really began to see patients as sick as Maeve until about 10 or 15 years ago,” Dr Weir said.

“It is almost as if there is some form of evolution of this disease process which is making some people with the condition much more severe.

“It is only when that happens that you start thinking about the things that are necessary to keep them alive.”

Miss Boothby-O’Neill’s father Sean O’Neill, a journalist at The Times, asked Dr Weir whether there was still resistance within the medical profession to ME being a physical illness.

“Until that dogma is properly buried and replaced by a proper scientific understanding of this condition within the medical profession as a whole, we are not going to progress very far with understanding it and being able to treat it properly,” he said.

“My only comment to that is there are none so blind as cannot see.

“There are still plenty of medical professionals out there in the community who are still inherent to the dogma and sadly has a very seriously damaging effect on understanding the true scientific nature of this condition.”

The inquest, which is scheduled to last two weeks, continues.