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When Keir Starmer was Director of Public Prosecutions, he decided to prosecute Kay Gilderdale for the attempted murder of her daughter, Lynn.
Gilderdale confessed how she helped her daughter end her “unimaginably wretched” life in 2008 after discovering she had made a failed attempt to do so herself, having lived with Myalgic Encephalomyelitis (ME) for over 16 years.
The case made national headlines and Starmer’s decision was publicly questioned by three judges amid debate over why he had pursued a charge of attempted murder, rather than assisted suicide. Gilderdale was found not guilty of attempted murder in January 2010.
The case reignited the debate on assisted dying, but it did something else too: it shone a spotlight on the realities of severe ME. That, one would hope, would have given the current prime minister some insight into a disease that is even more pressing today.
ME had left Lynn Gilderdale bedridden, unable to speak or eat and having to live in a quiet and darkened room, and in unrelenting pain that meant she required increasingly high doses of morphine.
Despite often being seen as ‘rare’ or simply causing ‘chronic fatigue’, the illness varies in severity and by long-outdated estimates, it afflicts around 250,000 people in the UK — more than Parkinsons or multiple sclerosis — with one quarter thought to be severely ill. But that overall figure has massively increased since the pandemic – now thought to be 1.3 million if those (like myself) with Long COVID who have ME symptoms are included.
Some may ask: is it any wonder the number of people off work with long-term sickness has increased by 500,000 since 2019? It now sits at nearly three million.
So perhaps Starmer’s “basic proposition” that “people need to look for work, but they also need support” sounds reasonable – on the surface. But what about underneath that?
ME is characterised in part by a hallmark symptom little seen in other diseases: post-exertional malaise (PEM). It refers to the worsening of symptoms after even minimal energy use – so what someone can manage one day, they can’t necessarily keep up with the next.
Not only that, but an activity that feels doable in one instance can in turn make someone deteriorate, especially when that deterioration can take hours or days to show itself and the warning signs of exceeding their energy envelope aren’t immediate.
It’s why charities like Action for ME emphasise the importance of pacing to reduce the chances of PEM. For some, simply concentrating on a conversation or sitting upright at a desk could cause a worsening.
But for the most severe, mere movement or sensory stimulation – the vibration of nearby footsteps, the touch of a familiar hand, or the slightest bit of light – can push someone who’s already severely ill into a more dangerous level of sickness.
Kirsty Stanley, an occupational therapist supporting people with long COVID told Byline Times the importance of understanding PEM is “huge – it’s the invisible aspect”, but almost every aspect of the disease – its existence, its symptoms, its causes, how to treat it – has long been debated, and sufferers still struggle to get appropriate care and support.
Already this year, the families of three women with severe ME have spoken out against the treatment they’ve received in NHS hospitals: Karen Gordon, Millie McAinsh and Carla Naoum. Among the concerns is the apparent failure of some clinicians to understand PEM, and the ME Association says the stories that filter through are just the “tip of the iceberg”.
Only in May did the NHS finally add PEM to its list of symptoms of ME – a mind boggling delay given those living with the illness have exhibited it for decades. And at the inquest into the death of Maeve Boothby O’Neill this summer, Dr Anthony Hemsley, the substantive medical officer for the trust at which Boothby O’Neill was treated, said there “are essentially no units or inpatient beds in any NHS institution or available privately” for patients with severe ME.
It is a circumstance that doesn’t just push severely ill people into the shadows — it forces family members to reduce or stop work altogether because they are needed as carers, often with little support.