ME: the condition still baffling the NHS

NHS staff treating a woman with ME didn't understand the condition, a doctor has told an inquest into her death.

Dr Lucy Shenton, the GP who treated Maeve Boothby-O’Neill, has joined calls for better funding of research into people suffering from myalgic encephalomyelitis, or ME, which is also referred to as chronic fatigue syndrome.

What happened to O'Neill?

Boothby-O’Neill had suffered with the condition for a decade before she died at home in October 2021. She was 27. The inquest at Exeter coroner's court is examining whether different clinical decisions could have saved her life.

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Dr Shenton, who took over Boothby-O'Neill's care in April 2021, said that many of the health professionals involved in caring for O'Neill were not doctors and their "lack of understanding" of severe ME may have been "relevant".

Just days before O'Neill died, Shenton wrote an email about the nurses that said: "This is so far out of their comfort zone." She added that one consultant even "expressed doubt" that ME was a physical illness.

Why does the NHS struggle with ME?

ME affects about 250,000 people in the UK but it is "poorly understood", said The Times, with "no diagnostic test or treatment". Symptoms of the condition include extreme tiredness, problems sleeping and difficulty concentrating.

"It is not known what causes ME/CFS," said The Independent, but a new study in the US earlier this year "indicates that rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform".

O'Neill's "harrowing" case "highlights clashing NHS narratives" on ME, said Alastair Miller, a consultant physician, in The Observer. "Having been involved in the diagnosis and management of this condition since the mid 1980s," he said, "I know of no other disease that provokes such controversy – pitting clinicians, researchers and patients against one another rather than in support."

There is "no consistent laboratory test or imaging (scan)", or biomarker, that will "definitively establish or exclude" a diagnosis of ME, Miller said, and "despite years of well-funded research, we do not yet have the unifying biomedical explanation of the symptoms that patients so desperately want". But doctors and researchers are "trying to do their best", he added.

How can ME care improve?

A woman is campaigning for better care for people with ME after her husband's life was "decimated" by the disease, she told The Times. Karen Hargrave said that her husband, James Herring, 37, a former marathon-running civil servant, struggles to speak, can't eat solid food, is on the highest level of disability benefits, and can only get out of bed once a day in a wheelchair to go to the bathroom.

A report for the campaign she has launched (#ThereForME) highlights how "failings" in NHS care are "the norm", said The Times. A survey of 328 patients found that not a single one with very severe ME felt the NHS "had been there for them". There are "no treatments" for ME, and no "specialist" inpatient NHS services.

"If ME had been taken seriously decades ago," said Hargrave, "there probably would be treatments by now."

A Department of Health and Social Care spokesperson said the government "will ensure that patients receive the care they deserve" and is "committed to improving the care and support for people with myalgic encephalomyelitis and chronic fatigue syndrome".

The coroner's findings on O'Neill's care will be delivered on Friday, and campaigners hope it will mark a "turning point" in the way ME patients are treated, said The Times.