NHS services unable to treat ME patients, says expert at Exeter inquiry | EM / Chronic Fatigue Syndrome

A leading expert on bovine spongiform encephalopathy has told an inquest there is still no hospital service in England capable of treating patients with the disease, and said it was a “betrayal” that some health professionals do not believe it is a real physical illness.

Speaking at the inquest into Maeve Boothby O’Neill, a woman who died of ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) in 2021, Dr David Strain expressed concern about aspects of her treatment at the Royal Devon and Exeter Hospital.

He said that when she was first admitted, he was not even told that a patient with severe ME was in hospital, despite his expertise in the field; after she was taken to hospital on another occasion, she was not placed on the ward he had requested.

The Exeter inquest heard Boothby O’Neill lived with ME for several years but the situation became more acute in 2021 when she was confined to bed and found it almost impossible for her to get up, wash, eat or drink.

Four months before her death at the age of 27, she wrote to her GP: “I don’t understand why the hospital didn’t do anything to help me when I came in. I’m hungry. I want to eat… Please help me get enough food to live.”

Strain, an honorary consultant to the Royal Devon and Exeter Foundation and an advisor to a myalgic encephalomyelitis charity, said that after Boothby O’Neill’s death he wrote to the hospital’s chief executive to warn: “We don’t have the facilities to treat someone like Maeve. There will be more cases of Maeve. We need to have a plan in place so that if this happens again the NHS doesn’t let people down with severe myalgic encephalomyelitis.”

But he told the inquiry: “I don’t think there is a service in the country that is appropriate for managing patients with ME. Since Maeve’s tragic case, we have treated other people with severe ME and we have learned. We have changed the way we manage the condition. But I don’t think there is a service in the country at the moment that can provide the kind of care that is needed.”

He added: “This is a disease that has been hugely stigmatized, mainly because there is no diagnostic test. Even today, some medical students have not recognized it as a physical disease. It is a tragedy and if this hearing helps to solve it, it will be a huge step forward. It is a physical disease.”

The inquest heard Boothby O’Neill was first admitted in March 2021 and was discharged the same day. The GP who treated her, Dr Paul McDermott, told the inquest he was “slightly shocked” by the news.

Strain said: “I was never notified when a patient with severe ME came into the hospital. Now, there is a procedure in place. If a patient with severe ME comes into the hospital, I am notified the same day or the next morning.”

When Boothby O’Neill was admitted to hospital in June 2021, Strain said he asked for her to be treated on a neurology ward, but she was taken to a specialist eating disorders ward.

Strain said: “I think being in the right environment would have sent a clear message that ME is not an eating disorder, it is a neurological condition, and everyone would have thought along those lines.” He said the decision to place her on the ward was made by an experienced nursing team and it was only the second time their advice about which ward a patient should be placed on had not been followed.

The investigation is continuing.