Stripy Lightbulb CIC recently contributed to The Canary’s investigation into the Department for Work and Pensions’ Access to Work scheme and its treatment of people living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (M.E./C.F.S). What that investigation exposed is troubling, not just because of the individual experiences involved, but because of the wider direction of travel it suggests.
We are increasingly seeing M.E./C.F.S. reframed within Access to Work as a form of “acquired neurodivergence”. This is not a neutral shift in language, it fundamentally alters how the illness is understood, what kinds of support are considered appropriate, and, ultimately, whether barriers to work are genuinely addressed or quietly sidelined.
For those of us who have spent years pushing back against the psychologisation of M.E./C.F.S., this feels uncomfortably familiar.
The term “acquired neurodivergence” is not one that has emerged from biomedical M.E./C.F.S. research or from the lived‑experience M.E./C.F.S. community. As The Canary documented, it largely traces back to psychology‑led and employment coaching frameworks that began expanding their remit during the early years of long Covid, when demand for workplace support rose sharply. In some cases, this framing can be linked to earlier documents such as a 2017 British Psychological Society report which grouped M.E./C.F.S. alongside neurological conditions under a broad “acquired neurodiversity” umbrella, with an emphasis on coaching and adaptation rather than disease pathology.
What is striking is not just where this language comes from, but where it does not. It does not arise from clinical diagnostic criteria, international disease classifications, or the extensive biomedical literature on M.E./C.F.S. Instead, it appears to offer a convenient conceptual bridge: one that allows M.E./C.F.S. to be routed into existing neurodivergence‑focused support pathways without having to grapple with the specific, and far more challenging, realities of the disease itself.
That matters, because neurodivergence and M.E./C.F.S. are not interchangeable concepts.
The neurodiversity movement was developed to challenge deficit‑based models of developmental neurological difference. It has been most clearly associated with autism, ADHD, dyslexia and dyspraxia – lifelong patterns of cognitive difference, where people are disabled primarily by a mismatch between their neurotype and their environment. Support, in that context, quite rightly focuses on environmental adjustment, communication styles, sensory considerations and social barriers.
M.E./C.F.S. is different.
There is no scientific evidence base that defines M.E./C.F.S. as a neurodivergent condition. On the contrary, M.E./C.F.S.. is recognised internationally as a neurological disease with systemic involvement, characterised by profound metabolic, immune and autonomic dysfunction. At the centre of the illness is post‑exertional malaise (PEM): a pathological worsening of symptoms following physical, cognitive or emotional exertion.
For many people with M.E./C.F.S., the primary barrier to employment is not poor organisation, time management, communication style or mindset. It is a lack of usable energy.
This is not an abstract claim. Over the past decade, biomedical research has increasingly pointed to impaired cellular energy production in M.E./C.F.S., including evidence of mitochondrial dysfunction and disrupted metabolic pathways. Exercise and exertion provoke abnormal immune and inflammatory responses, rather than the adaptive responses seen in healthy individuals or those who are merely deconditioned. Two‑day cardiopulmonary exercise testing has repeatedly demonstrated objective, reproducible deterioration unique to M.E./C.F.S., a finding that cannot be explained by psychological factors alone. Brain imaging studies also show that the cognitive problems people with M.E./C.F.S. experience, often described as “brain fog”, are more likely due to the brain struggling to meet its energy needs, rather than to any underlying neurodevelopmental difference.
None of this fits comfortably within a neurodivergence framework.
Of course, some people with M.E./C.F.S. are also neurodivergent. That is not controversial. People can, and do, live with multiple conditions. But co‑occurrence does not justify redefining M.E./C.F.S. itself. Support designed to address executive functioning or sensory processing differences cannot, by definition, resolve a disease where exertion triggers physiological collapse.
This distinction matters enormously in the workplace. From our work at Stripy Lightbulb CIC, training employers, HR teams, occupational health professionals and educators, we repeatedly see how misclassification leads to inappropriate expectations. Coaching someone with M.E. will not create energy where none exists. NLP will not prevent PEM. Seeing extreme fatigue as something that can be “thought through” or coached away doesn’t stop the physical inflammatory reactions happening in M.E./C.F.S.
What is especially concerning is how neatly this “acquired neurodivergence” framing slots into a broader social‑model‑only approach. While the social model of disability has been invaluable in challenging discrimination, it has always struggled to represent M.E./C.F.S. accurately. For people with M.E./C.F.S., barriers are not solely external or attitudinal; they are biological. No amount of willpower, adjustment or mindset work can override pathological energy limitation.
Seen in this light, the current direction of Access to Work feels less like progress and more like a quiet regression. Psychologisation has simply been repackaged in kinder language, allowing systems to appear supportive while still avoiding the uncomfortable implications of a genuinely biomedical disease.
What is happening within Access to Work is not just a matter of language. How M.E./C.F.S. is defined determines what support is offered, what assumptions are made about capability, and whether people living with the condition are believed when they describe their limits. Reframing M.E./C.F.S. as “acquired neurodivergence” risks locking a serious biomedical disease into models of support that cannot address its core reality: a pathological lack of energy, driven by physical dysfunction, not mindset or motivation.
At Stripy Lightbulb CIC, we are not prepared to see this misunderstanding embedded into policy and practice by default. We are therefore formally raising our concerns with the Department for Work and Pensions, alongside other relevant government departments and bodies with responsibility for employment, disability and health. We are doing so because this is a critical moment. Once misclassification becomes normalised within government schemes, it becomes far harder to undo the harm that follows.
Treating M.E./C.F.S. as a cognitive or behavioural issue may be administratively convenient, but it does not change the biology of the illness. Coaching does not restore energy production. Reframing fatigue does not stop inflammatory responses in the body, and no amount of psychological language removes the risk of post‑exertional malaise. When support models ignore these realities, they fail the very people they claim to help.
People with M.E./C.F.S. deserve support that reflects the science of their condition, not frameworks that sidestep it. They deserve employers and policymakers who understand that their limits are physiological, not a lack of resilience or adaptability. Above all, they deserve systems that learn from past mistakes rather than repeating them under new terminology. Renaming misunderstanding does not make it progress. Understanding does, and that is what we will continue to push for.
