As Stripy lightbulb CIC, a proud member of the Disability Benefits Consortium (DBC), we know first-hand the profound challenges faced by individuals living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (M.E./C.F.S.). The fluctuating, often invisible nature of M.E./C.F.S. symptoms – from post-exertional malaise to cognitive dysfunction, extreme exhaustion and pain – makes navigating daily life, let alone the benefits system, incredibly difficult.
That’s why the recent work of the DBC, a powerful coalition of around 150 national and regional organisations, is so critically important for our community. The DBC is fiercely opposing the government’s proposed cuts to disability benefits, which pose a direct and devastating threat to people with M.E./C.F.S.
The government’s plans, outlined in the ‘Pathways to Work’ green paper and Spring Statement, include:
- Tightening PIP criteria: The proposal to require a minimum of four points in one single daily living activity to qualify for the PIP daily living component is deeply concerning for people with M.E./C.F.S. Our condition often manifests as a complex web of symptoms affecting multiple areas – preparing food, washing, managing medication, engaging with others – but perhaps not accumulating a high score in just one specific area. This change risks many with significant, debilitating M.E./C.F.S losing their PIP entirely, despite their substantial needs. The daily living component is crucial for covering the extra costs associated with M.E./C.F.S., from aids and adaptations to help with household tasks, to specialist transport for appointments when public transport is impossible due to fatigue or sensory overload.
- Cutting the Universal Credit ‘health element’ and scrapping the WCA: The extra financial support provided through the UC health element is a lifeline for many with M.E. who are too unwell to work. Freezing this for current claimants and halving it for new ones will push more people with M.E./C.F.S. into dire poverty. Furthermore, the plan to scrap the Work Capability Assessment (WCA) and use the tightened PIP assessment as the gateway means that if you lose your PIP daily living award, you could lose your UC health element too – a combined loss that could be catastrophic for someone living with M.E./C.F.S.
- The ‘Work-Related Conditionality’ Trap: The idea that these cuts will ‘incentivise’ people into work completely ignores the reality of M.E./C.F.S. For many, work is simply not an option due to the severity and unpredictable nature of their illness. Forcing work-related conditionality and sanctions on individuals whose bodies simply cannot comply will lead to greater hardship, worsening health, and increased isolation, rather than meaningful employment. High-quality, genuinely opt-in employment support is the only way forward.
These cuts are projected to push 400,000 people into poverty, including many with M.E./C.F.S., and could strip some households of up to £12,000 annually. For a condition like M.E./C.F.S., where even small extra costs for managing symptoms or maintaining some quality of life are significant, these cuts could be devastating.
We’re incredibly pleased to report that the DBC’s recent parliamentary event, aimed at briefing MPs and their staff on the devastating impact of these proposed cuts, was a success! Nearly 40 politicians and/or their staff were in attendance, demonstrating a strong appetite to understand these critical issues. This level of engagement is a testament to the hard work and collective voice of the DBC and its members. It shows that our message is getting through, and that there are indeed ears willing to listen in Parliament.
The DBC’s call to action is clear:
- Raise Concerns: Urgently alert government ministers to the profound dangers of these plans.
- Delay the Vote: Postpone any vote until all necessary impact assessments (covering the NHS, social care, and homelessness) are released and fully understood. Without this, MPs cannot make informed decisions about policies that will fundamentally reshape the lives of disabled people, including those with M.E./C.F.S.
- Vote Against: Oppose these plans if any impact assessment shows a negative impact on disabled people.
The success of the DBC’s parliamentary event is a vital step, but the fight is far from over. We urge everyone, especially those living with M.E./C.F.S., their families, and carers, to continue to speak out.
- Contact your MP: Use this momentum. Share your personal experiences and highlight why these cuts would be so damaging for people with M.E./C.F.S. Your lived experience is powerful evidence.
- Share this information: Spread the word about the potential impact of these cuts. You can find valuable and important information, including pen portraits, on the DBC website
Together, we can ensure that the voices of those with M.E./C.F.S. are heard loud and clear, and that the government rethinks these hugely harmful proposals.
