Savannah Victora-May fears she is starving to death. For 11 months, the 23-year-old has been in an NHS bed at Queen Elizabeth Hospital in southeast London.
She has severe myalgic encephalomyelitis (ME) and her condition has deteriorated rapidly. Victora-May is unable to eat or drink and is in severe pain, drifting in and out of consciousness. She has lost 30kg since her admission in March and has eaten nothing since January 18.
Speaking from hospital via a friend, Victora-May described the pain as “like being lowered into a bath of acid and the acid rating gets turned up more and more every half hour”.
She said: “My body cannot take even a shred more of this. I’m not physically able to continue, I am so weak, starving, in agony, forgetting things, confused, slow heart rate, can’t regain consciousness. I’m dying.”
Victora-May dreamt of studying medicine at university but developed ME when she was 15 after a bout of glandular fever and has been mostly bedbound since. She said she had faced accusations that her condition is psychological.
Campaigners and MPs say her case highlights the continuing inadequacy of NHS care for sufferers of ME. The government has not met its commitment in July to consider a new national specialist service for severe ME.
In 2021, Maeve Boothby O’Neill, 27, died from malnutrition caused by severe ME. The coroner issued a prevention of future deaths report highlighting “non-existent” specialist care and said there would be more preventable deaths unless the government took action.
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ME, also known as chronic fatigue syndrome, is a complex neurological disorder, usually triggered by a viral infection, which affects an estimated 400,000 people in England and Wales. Symptoms include exhaustion and pain and patients may be bedridden and unable to eat or drink. Severe cases can be fatal. Overturning a misconception in medicine that ME is a psychological or behavioural disorder has taken decades.
Maeve Boothby O’Neill with her father, Sean O’Neill
There is no treatment or cure but the National Institute for Health and Care Excellence (Nice), the NHS watchdog , has issued treatment guidelines highlighting that many patients “have experienced prejudice and disbelief and could feel stigmatised”.
Sonya Chowdhury, the chief executive of Action for ME, said a psychiatrist had suggested Victora-May’s symptoms were the result of past trauma.
She said that while Nice guidelines stated that ME patients could experience “hypersensitivity to light, sound, touch, movement, temperature extremes and smells”, Victora-May had had “lots of people going in and out of the room, turning the light on”.
Chowdhury said Victora-May’s case had thrown into “razor-sharp focus” continued failures in treatment for severe ME. “I’m very worried that without the proper care she’s going to die, it’s appalling,” she said.
“The coroner’s inquest following Maeve’s sad death was very clear about improvements that could be made and the need for action. It’s appalling that several years after Maeve’s death we are still seeing similar treatment that is leaving people at best in severe pain and distress and at worst facing death.”
Victora-May’s case has been raised in the House of Commons
Tessa Munt, a Liberal Democrat MP, raised Victora-May’s case in the Commons last week and asked for an “urgent update” on a specialised NHS service.
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Munt said: “A young woman, Savannah Victora-May, is in a critical condition due to very severe ME, compounded by inadequate treatment in hospital, where she has been for 11 months, since March last year.
“One of the few and welcome commitments from the government’s final delivery plan for ME was to explore whether a specialised service for very severe ME should be prescribed by the secretary of state. The ministerial foreword acknowledged that avoidable deaths of people with ME should “become never events”, but in the continued absence of specialist provision, it is difficult to see how situations like Savannah’s can be prevented from recurring.”
Lewisham and Greenwich NHS Trust, which is responsible for the Queen Elizabeth Hospital, said: “We refute the allegations that our hospital is providing poor care. On the contrary, we have a multi-disciplinary team working together diligently and holistically to care for this patient and to protect their best interests. This team has sought regular advice from other specialists within our hospital, as well as multiple external medical experts in ME, following Nice guidance wherever relevant.
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“ME is a complex, chronic medical condition and patients living with ME often need psychological support to complement their clinical care, which we offer patients as needed. Alongside this we endeavour to tailor our medical care according to individual needs in keeping with our professional assessment of their clinical needs and treatment.
“For most patients, acute hospital care is the right setting when they need medical treatment. When this is no longer required, our experienced multi-disciplinary teams work together with patients and their carers to secure discharge to the most appropriate setting as soon as that is available. We welcome MP Munt’s call for more support for patients living with severe ME, including care facilities that are better suited to non-medical care and rehabilitation.”