The Labour Party’s brutal Department for Work and Pensions (DWP) benefits cuts will be a disaster for people living with the devastating chronic systemic neuroimmune disease myalgic encephalomyelitis (ME). Appallingly, as it turns out, that hasn’t stopped two of the All-Party Parliamentary Group (APPG) on ME openly backing them.
It means that the pair of staunch Labour right sycophants are claiming to champion ME patients in one breath, while simultaneously throwing the community under the bus in another.
Get Britain Working group: Steve Race and Luke Charters
The Labour MPs in question are one freshly elected Exeter MP Steve Race, and Gen Z Labour right newcomer MP for York Outer, Luke Charters.
Notably, at the start of March, the duo both signed the infamous letter to DWP boss Liz Kendall. Proclaiming themselves the ‘Get Britain Working’ group alongside 34 other MPs, this issued a public statement of support for Kendall’s and chancellor Rachel Reeves’ plans to cut chronically ill and disabled people’s benefits.
Needless to say, the Canary has found that think tank Labour Together was inextricably wrapped up in the group. And, as the Canary’s Steve Topple pointed out, this was partly the brainchild of none other than prime minister Keir Starmer’s now chief of staff, Morgan McSweeney. Significantly, the think tank – and McSweeney – have long been torchbearers for the neoliberal Labour establishment now at the helm of punching down on chronically ill and disabled people:
For example, Reeves before she was chancellor platformed much of her ‘securonomics‘ thinking via Labour Together. McSweeney ran Kendall’s 2015 leadership bid. And ex-shadow DWP secretary of state Jonathan Ashworth is now Labour Together’s chief executive.
Unsurprisingly, both Race and Charters took substantial donations from Labour Together or individuals linked to it for their election campaigns. And who else backed Kendall’s leadership bid? Race too of course, back when he previously stood as a candidate for Labour in the 2015 election.
So, it’s hardly surprising the two MPs have both gotten behind this corporate-captured sham of a Labour government and its sweep of catastrophic welfare cuts. What should be at least somewhat surprising though, is that they are also part of the APPG on ME.
APPG on ME: membership shows it’s a whitewash
The APPG on ME restarted in December 2024. Charters was present at the inaugural meeting, and both are now registered members.
Controversial major organisation Action for ME acts as the group’s secretariat. And the non-profit has named Race as one of its ‘Parliamentary Champions’ for ME.
On its website, Race is quoted stating his support:
I am honoured to become a Parliamentary Champion for Action for ME and look forward to supporting their vital work raising greater awareness of and advocating for people with ME
The tragic passing of Maeve Boothby O’Neill, a young woman from Exeter who had severe ME, has brought to light the significant challenges faced by people living with ME within our healthcare system. Her inquest highlighted the urgent need for better understanding and specialist care for those living with ME.
I am committed to working with Action for ME to push for greater awareness and action, ensuring that the voices of ME patients are heard and that they receive the care and support they deserve.
As the MP for Exeter, where Maeve Boothby O’Neill lived and whose local NHS services disastrously failed her to fatal consequences, Race contends to be greatly aware of the consequences of the ongoing systemic problems for people with ME.
In November, he tabled a parliamentary written question asking if the Department for Science, Innovation and Technology (DSIT) would:
take steps to prioritise research funding for myalgic encephalomyelitis.
Similarly, in September, Charters also tabled a written question to the Department for Health and Social Care (DHSC) about ME services in his local area.
Yet, at the same time the two have called for more services, support, and funding, they’ve got behind their government slashing social security for people living with ME.
PIP: already near impossible to get for people with ME
How many people living with ME get PIP? The most recent data shows 56,102 claiming it with ME listed as their primary condition.
The highest current estimate knocking around for the number of people living with ME in the UK is 1.3 million people. Therefore, this means that only just over 4% of the population living with it are currently claiming PIP. However, this figure takes account of the number of long Covid patients who fit the diagnostic criteria for ME, so we should also factor in the number claiming for this too. Presently, that’s 11,310.
So, even if we added every single one of those to our ME claim success rates, that still only brings the percentage up to a little over 5%.
The Canary has also previously detailed how this figure is likely a vast underestimate anyway. In reality, there are no definitive statistics on the number of people living with the devastating condition today – and current numbers rest on prevalence studies over 25 years old and themselves massively limited.
Needless to say, the PIP process is both enormously inaccessible for people living with ME, as well as its criteria hugely exclusionary of it as a fluctuating condition. Unsurprisingly, the DWP’s own research has revealed this on a number of occasions. A tranche of reports the previous Conservative government had buried exposed this in October. In its output, three separate publications littered with antiquated terminology for ME and common crossover conditions like Ehlers-Danlos Syndromes (EDS) showed that in a number of cases:
the DWP’s benefits system is making severely chronically ill ME/CFS and EDS patients – and people with other similarly fluctuating chronic health conditions – sicker. At the same time it’s doing that, it’s regularly denying disability benefits to them.
Moreover, the department’s data backs this up when you look at the number of those who had to go through mandatory reconsiderations (MR) to get it. In total, this stands at 30,160 – over half of the successful PIP claimants living with ME.
The point is, the PIP process is already notoriously difficult for people living with ME. Now, the new rules – particularly the 4 points in one category stipulation – will only put up more barriers to ME patients accessing it.
Medical misogyny, psychologisation, and classism
On top of this, the Canary has extensively documented the pervasive lingering problem of medical misogyny and misdiagnosis in ME. Notably, a vested biopsychosocial lobby has long psychologised patients living with the disease, ascribing psychiatric labels over recognition for ME and a multitude of co-occurring under-diagnosed and under-recognised conditions.
So, as Labour seeks to strip PIP from claimants living with mental health disorders, there’s a clear and present danger that many will be people living with ME and connected conditions that doctors have erroneously attributed a psychiatric origin. This will include conditions like depression, various eating disorders, and one infamous contemporary rebrand of hysteria ‘conversion disorder’ that clinicians have long weaponised against ME patients.
What’s more, the top line figures also likely conceal many more living with the devastating disease. This is because, as well as rife longstanding medical misogyny, there’s also rampant classism at play in diagnoses as well. Doctors misdiagnose many people living with ME with conditions like fibromyalgia. Topple has separately pointed out how diagnoses of this soared after the notorious PACE trial.
This was the junk study – part-funded by the DWP – that atrociously promoted dangerous treatments to ME patients, which undermined its physiological basis, and ostensibly machinated to force them into work at risk to their health.
But importantly, he also underscored how diagnoses of:
fibromyalgia are highest among the poorest in society. For CFS, they’re the lowest
So, he articulated how there’s classism at the root of this. Specifically, the poorest communities are disadvantaged in getting proper diagnoses, owing to a combination of factors. You can read more about this here.
However, the crux of this is that there’ll be many people with misdiagnosed conditions like fibromyalgia who will also face more difficulty getting PIP too. And it’s arguably even easier for the DWP to dismiss people with fibromyalgia as fit for work than it is for ME. Partly, ME patients now have some protection from harmful psychologising treatments in the form of the National Institute for Health and Care Excellence (NICE) guidelines. Even so, this has largely been a whitewash anyway, since doctors still practice the treatments, rebranded.
Ultimately, all that is to say that these will hit poor chronically ill communities first and foremost, and that includes misdiagnosed ME patients.
Get Britain working means people living with ME too
Then, quite apart from the problems obtaining PIP, there’s also the pure fact that the cuts to Universal Credit (UC) LCWRA will undoubtedly hit many people living with ME. So too will the department rolling the Work Capability Assessment for it into one, so only those eligible for PIP can claim the health-related part of UC.
Overall then, there’s a lot at stake for people living with ME with the Labour government’s sweep of ‘reforms’.
By all accounts, when Race and Charters chest-beat their “Get Britain Working” affiliation, that invariably includes people living with ME. Instead of financial support, the DWP wants to supplant these benefits with so-called “support conversations”.
It foresees some of this taking the form of its favoured work programmes. This includes for instance its recently launched WorkWell pilots – mentioned in the Green Paper no fewer than five times. The Canary previously highlighted how the biopsychosocial model of disability lobby has its fingerprints all over the scheme.
Crucially, the department awarded the training contract for work and health coaches to the Vocational Rehabilitation Association (VRA). One of the forefathers of the biopsychosocial model – Mansel Aylward – was its patron until his passing in May 2024.
However, Aylward is just the tip of the iceberg. The whole association is awash with organisations and individuals with links to the scandal-riddled PACE trial. In short, WorkWell is neck-deep in the psychologisation of ME from its outset.
This is what Race and Charters are backing, and it’d be ignorant of both of them not to be fully aware of what this could mean for people living with ME.
Wake up and smell the Labour right roses
To make matters worse, both Race and Charters also voted for Kim Leadbeater’s assisted dying bill at second reading. That is, not only are the pair pushing for dangerous welfare cuts for chronically ill and disabled claimants, they also support legalising assisted suicide which will further endanger the lives of people living with ME. Crucially, in other countries that have brought in legislation, the lack of treatment, social security, health and social care, all underpinned by a lack of research funding and continued psychologisation, has pushed people living with ME towards this.
The Canary approached both MPs for comment on the detail of this article, but neither had responded by the time of publication.
This should be a wake-up call. It’s long past time people stopped jumping at the merest mention of ME from the mouths of those in power. Treating MPs like some portentous messiah destined to deliver research funding and curative treatment salvation to ME patients is a doomed and naive misplacement of faith.
Moreover, the much-vaunted and long-delayed ME Delivery Plan is not happening in a political vacuum. To pretend like it is, is a dereliction of all objective sense that will only end up biting the ME community in the ass in the medium to long-term anyway.
Worst of all, it’s a failure of solidarity with all chronically ill and disabled people these disgusting cuts are set to hit. No MP that’s choosing to fight for the ME patients with one hand, while taking away support for them and other chronically ill and disabled people with the other, will ever be a champion for the ME community.
Now, the question is whether people will finally wake up and smell the right-wing Labour roses? Because when push comes to shove, this government is going to turn things around for people living with ME about as much as the last – and the APPG on ME sure as hell isn’t going to change that.
Featured image via the Canary
