Starmer’s Plan to Push Long Term Sick Into Work Risks ‘Devastating Deterioration’ of Conditions Costing Even More in the Long Run

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Despite often being seen as ‘rare’ or simply causing ‘chronic fatigue’, the illness varies in severity and by long-outdated estimates, it afflicts around 250,000 people in the UK — more than Parkinsons or multiple sclerosis — with one quarter thought to be severely ill.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.  

Sarah Boothby told the inquest into her daughter’s death that her ability to work was compromised as Boothby O’Neill’s care needs increased. After Lynn Gilderdale died, her mother later recounted how she gave up work to look after her daughter because “I was the person who knew best how to lift Lynn and attend to her needs without causing her any more pain”.

Many with ME don’t start off severely ill; they get worse, sometimes through following official advice – most notoriously, graded exercise therapy (GET). It’s a  widely-condemned ‘treatment’ for ME that was finally removed from NICE guidelines in 2021, and it involves the gradual increase of physical activity with the aim of increasing exercise tolerance. But it has a long history of causing harm instead.  

This summer’s inquest heard that Boothby O’Neill wrote, “I know of nobody who has  benefitted from GET. I know a lot of severely affected people whose decline was  precipitated by it. Evidence of harm is mostly anecdotal because large, rigorous studies into its impact have not been done.”

Does Starmer’s admiration for “schemes where businesses are supporting people back into work from long-term sickness” risk creating GET mark 2? 

Even since the pandemic, sufferers still struggle to get the right help. The NHS webpage for Long COVID still has no mention of PEM and one GP told me she has  patients waiting two years to be seen by her local Long COVID clinic.

It adds to the decades-long history of ME patients being let down by healthcare and support systems that don’t understand their illness, some having to go through tribunals to get their benefit entitlement. 

So how does Starmer expect employers to develop strategies to help the long-term sick back into work when the public services we rely on to get us there remain insufficient or misinformed?  

The difficulties patients encounter have often been attributed to the lack of  biomedical research funding or a diagnostic test.

The Devon coroner recently heard evidence that the hospital which cared for Boothby O’Neill has seen “a higher number of patients with this severity of illness since the pandemic, and it’s not clear why”. But in the eyes of many, the causes of the disease aren’t wholly unclear. 

“The common denominator is immunological stimulus”, says Dr William Weir, a  semi-retired consultant in infectious diseases who first started seeing patients with ME symptoms at London’s Royal Free Hospital in the 1980s. “It’s not any singular infection that causes the problem but, because infection is a major trigger, I was seeing a lot of people with ME.” It is because of that trigger that the illness is, in some cases, also known as post viral syndrome or chronic fatigue syndrome (CFS).  

And just as viruses don’t discriminate, parliamentarians aren’t immune. The health  minister Andrew Gwynne has spoken about living with Long COVID and the Home  Secretary, Yvette Cooper, previously recounted having CFS in the 1990s. 

With such experience at the heart of Government, it would be hoped that the risks of  pushing sick people into work too soon or too fast were understood. And to the  Government’s credit, it has pledged to publish the Delivery Plan on ME this winter –  something the previous administration dragged its heals on.

But perhaps we shouldn’t expect such understanding from all of those who have  “recovered”, at least enough to work.

Humans seem to have a tendency to assume authority on illness, especially if we have experienced it ourselves and come out the other side.

Earlier this year, Dragons Den attracted criticism after it featured “unfounded claims” from a business owner who said she had recovered from ME with the help of a product she subsequently gained investment for on the programme. The mantra seems to be: ‘It’s worked for me, so it can work for you.” 

In 2015, Cooper wrote a somewhat unsympathetic piece in the Independent, saying “many CFS sufferers, and the people who speak up for them, only make the [debate] polarisation more pronounced. By portraying themselves as victims, appearing always to be lamenting the way the world treats them, they only confirm the healthy in their views.”

But if there’s anything we should all know about medicine, it’s that people’s bodies react differently to illness; symptoms vary and so do responses to drugs and therapy. For some with ME, the threshold for triggering PEM is so low that it becomes virtually impossible to manage. And even the less severely affected need to be careful.  

Stanley tells me “one of the biggest issues is ableism in society – not recognising  invisible illness and valuing experience. Everybody I’ve worked with who has Long COVID or ME, I have to tell them to do less rather than do more, every single  person.”  

It’s not such an appealing narrative for the welfare state, but there’s a crucial message in all of this that’s easy for a cash-strapped administration to gloss over: pushing beyond your body’s limits risks devastating deterioration, and that can be more costly down the line.

This Government has the experience to understand that.  If they ignore it, they risk perpetrating further harm.