Introduction
The ME Association is fundamentally opposed to the reforms proposed in the Pathways to Work Green Paper. We believe these reforms represent a profound step backward in the support offered to disabled people, particularly those living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and post-viral conditions such as Long Covid. If enacted, these measures risk dismantling key safeguards in the social security system; placing thousands of vulnerable people at increased risk of poverty, isolation, and harm.
We recognise and support the government’s stated ambition to improve employment outcomes for disabled people. However, the approach outlined in the Green Paper — marked by increased conditionality, tighter eligibility rules, and reduced financial support —rests on assumptions that do not align with the lived experience of our community or with the structural realities they face in the labour market.
There is no credible evidence that cutting support will ‘incentivise’ disabled people into work. On the contrary, the withdrawal of vital financial and practical assistance is likely to force people further from the labour market and erode the basic stability many rely upon to manage their health. People with ME/CFS often live with complex, fluctuating, and poorly understood symptoms. Our existing social security system struggles to provide a flexible and personalised approach to support people living with ME/CFS. The government’s reforms will further undermine the needs of our community.
The ME Association has begun gathering detailed data through a nationwide survey to understand better how these proposals will affect our community. This evidence, once available, will form the basis of our full response to the Green Paper and will be available to MPs and policymakers. Based on the information currently in the public domain, it is clear that the proposed reforms will have serious and far-reaching consequences.
This submission outlines our key concerns and provides a detailed analysis of how these reforms could affect people with ME/CFS. It also sets out the ME Association’s recommendations for a more just, transparent, and effective approach to the social security system: one that listens to the voices of disabled people and reflects the reality of their lives.
Estimated Number/Percentage of People Living with ME/CFS Likely to be Affected
Although the government has not yet published an impact assessment examining how the proposed reforms in the Green Paper would affect people with ME/CFS, a recent parliamentary question to the Department for Work and Pensions (DWP) confirmed that approximately 25,000 individuals currently receiving Personal Independence Payment (PIP) have ME recorded as their primary condition. Of this group, the DWP stated that around 12,000 scored fewer than four points across all daily living descriptors.
The DWP has not, however, provided a breakdown of how many within this cohort receive the standard or enhanced rate of the daily living component.
Based upon an extrapolation of these figures, it is reasonable to estimate that up to 48% of current PIP claimants with ME could lose their daily living award under the proposed threshold — should the government’s reforms be implemented.
The ME Association is concerned that individuals with ME/CFS may be disproportionately affected by the proposed reforms. It is important to note that these estimates are indicative only: the figures provided by the DWP are rounded and may not account for all claimants. In addition, PIP awards are categorised by primary condition, with comorbidities not routinely recorded. As ME/CFS is often accompanied by other complex health issues, it is likely that some affected individuals may not be captured within these figures.
In order to strengthen the available evidence base, the ME Association is currently conducting a national survey of its members and wider community to gather robust quantitative and qualitative data on the experience of claiming welfare benefits among people with ME/CFS and Long Covid. The results of this survey will inform our full response to the Green Paper and will be made available to MPs and policymakers.
ME/CFS and Labour Market Participation
Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is a serious, complex, and multisystem condition that significantly limits work participation. Individuals with severe or very severe ME/CFS are typically unable to engage in any form of employment, while many with mild or moderate symptoms face substantial challenges sustaining consistent work.
For the majority, ME/CFS presents as a fluctuating condition — symptoms are persistently present, but their severity can vary unpredictably from day to day, or even within the same day. This variability makes it difficult to maintain regular working patterns or meet the demands of conventional employment. Those with ‘mild’ ME/CFS may be able to work part-time or in flexible roles, often relying on support from social security systems such as Personal Independence Payment (PIP), Access to Work, and the statutory protections afforded under the Equality Act 2010. These provisions are often a lifeline to enable living with ME/CFS to participate in the labour market.
It is unlikely that individuals with ME/CFS would be ‘incentivised’ to work by the withdrawal or reduction of social security provisions. On the contrary, removing these forms of assistance would make it harder for many to enter or remain in work, thereby undermining the government’s goal of increasing employment among disabled people. Cutting benefits risks pushing people with ME/CFS further from the labour market by eroding the support necessary to enable participation.
Further barriers to employment exist within the current system. Low earnings thresholds while on Employment and Support Allowance (ESA) — currently £195.50 per week — and the risk of triggering a reassessment simply for attempting work create disincentives. The complexity and administrative burden of reapplying for benefits adds to this deterrent. While the Green Paper’s proposal for a 12-week ‘Right to Try’ scheme is a positive step, this timeframe may be insufficient for those with ME/CFS to assess whether they can sustain employment without exacerbating their condition.
If the government is serious about increasing labour market participation among disabled people, including those with ME/CFS, it must address the underlying structural barriers rather than prioritising reforms that lower eligibility thresholds and increase conditionality. Many people with ME/CFS who are willing to work are prevented from doing so by a lack of accessible, well-paid, and flexible job opportunities. In addition, workplace discrimination remains a significant and under-addressed issue within our community.
It is concerning that the government is pursuing welfare reform through the Pathways to Work Green Paper ahead of receiving the findings of the Keep Britain Working Review, chaired by Sir Charlie Mayfield. This review is expected to make substantive recommendations on how employers and government can better support disabled people into work. Implementing welfare changes in advance of this guidance risks putting policy before evidence and undermines the government’s stated objectives.
While the Green Paper references a planned £1.8 billion investment in employment support, it does not provide detail on how these funds will be allocated, nor does it set out any measurable targets for how many disabled people are expected to move into work as a result. It is difficult to accept that these reforms will deliver the projected savings or employment gains without a transparent and evidence-based implementation strategy.
What is also notably absent from the Green Paper is a commitment to investment in research, treatment, and care for disabled people — including those with ME/CFS. Improved access to healthcare and better understanding of the condition through medical research would offer a more meaningful pathway to increasing economic activity. Targeted treatments and therapies have the potential to reduce reliance on the social security system while enabling more people to enter or return to work. For many with ME/CFS, benefits are not a choice but a necessity in the absence of effective treatments.
The Flaws of the Pathways to Work Consultation
The consultation process set out in the Pathways to Work Green Paper raises serious concerns about transparency and due process. Not all of the proposals under consideration have been included for formal consultation, which undermines the legitimacy of the process and risks eroding trust between disabled people and the government.
The absence of a clear and detailed policy rationale for the most far-reaching proposals is particularly troubling. These include reforms with profound consequences for disabled people, yet they have been introduced without sufficient explanation or engagement with those affected. This has created a perception that fiscal savings, rather than improved outcomes, are the primary driver of reform – despite significant uncertainty surrounding the likelihood of the government achieving these projected savings.
The consultation is also hindered by the continued lack of a comprehensive impact assessment. As of 16 June 2025, no such document has been made available. This omission significantly impairs the ability of stakeholders, including Parliament, to meaningfully assess, scrutinise, and respond to the proposed changes. It is especially concerning that a parliamentary vote may be scheduled before this essential evidence has been published.
In the absence of robust data and meaningful consultation, it is difficult to justify the scale and pace of the proposed reforms. The process to-date has fallen short of the standards required for democratic legitimacy and risks further alienating the disabled people whose voices should be central to this conversation.
4 Points: The Introduction of Additional Conditionality & a New ‘Impairment Threshold’
The proposal to introduce a new “impairment threshold” for Personal Independence Payment (PIP) — requiring claimants to score at least four points in a single daily living activity — risks disproportionately excluding people with ME/CFS and other fluctuating or multi-faceted conditions from the social security system. Many individuals with these conditions accumulate lower scores across several descriptors, rather than reaching four points in a single category. According to estimates drawn from a recent parliamentary question, approximately 48% of current PIP claimants with ME/CFS could become ineligible under the proposed threshold.
The Green Paper does not offer a clear rationale for this significant policy shift, nor has it included the proposal as part of the formal consultation. While the government states a desire to focus support on those with “higher needs,” it has not justified why an individual with needs across multiple domains is considered less eligible than someone whose needs fall predominantly within a single area. This approach fails to reflect the cumulative impact of complex conditions and risks disadvantaging claimants with fluctuating or invisible impairments. Without a published impact assessment, the scale of exclusion remains unknown.
The proposal to replace the Work Capability Assessment (WCA) with a single PIP-based assessment may appear administratively efficient but raises important risks. The WCA currently includes safeguards under Regulations 29 and 35, which protect claimants for whom work or work-related activity would pose a serious risk to health. These protections are absent from the current PIP framework, and the government has not set out how equivalent safeguards would be implemented under a single-assessment model. Assessments for disability-related costs and assessments of work capability serve different purposes and should not be conflated.
There are also concerns about assumptions made in the Green Paper regarding “behavioural changes” among claimants, assessors, or decision-makers in response to the proposed reforms. Implicit in this is the expectation that claimants will need to improve their applications by seeking professional advice in order to meet the new threshold. However, access to qualified welfare advice is limited and is often unavailable to those who need it most. The social security system should be accessible by design, not contingent on navigating complex criteria with the help of specialist advisers.
In addition, the government has yet to publish details on any transitional protections for claimants who may lose support as a result of these reforms. This information should be made available as part of the impact assessment and ahead of any parliamentary vote. Claimants, and their representatives, deserve to understand the consequences of reassessment under the proposed model, and MPs require full transparency to make informed decisions.
The current system already poses significant challenges for people with ME/CFS. A DWP-commissioned report published in 2024 acknowledged that existing application and assessment processes “do not make it easy for people with fluctuating conditions to describe changing levels of disablement,” causing “frustration, fear and a sense of inequality.”
Despite this acknowledgement, the proposed changes risk compounding rather than resolving existing issues. Unless lessons are learned from previous failures, disabled people with complex and variable conditions may once again bear the brunt of ill- conceived policy reforms.
A Note of Caution: Reshaping the Welfare State and Revising the Social Contract The proposed reforms to Personal Independence Payment (PIP), Universal Credit, and signals of future reductions to Access to Work, social care, and local government provision – raise serious concerns about the cumulative impact on disabled people. Taken together, these retrogressive policies have the potential to reshape the welfare state. If implemented, as currently envisaged, these reforms would alter the social contract in ways that are likely to disadvantage disabled individuals. Rather than reducing overall expenditure, the effect may be to shift costs away from central government and onto local authorities, families, charitable organisations, and disabled individuals themselves. This redistribution of responsibility could deepen inequity and increase pressure on already overstretched local services. The Green Paper seeks to focus social security provision upon disabled people with “higher needs”. There is a risk that only those deemed to meet the revised criteria will be seen to be the “deserving disabled” and worthy of social security assistance. Other disabled people— whose needs are less visible, fluctuating, or complex — may find themselves excluded by being reclassified as ineligible: thereby becoming the “undeserving disabled”. People with ME/CFS, many of whom experience non-linear and unpredictable patterns of disability, may be especially vulnerable to this narrowing of support. These reforms, if enacted, would have far-reaching social consequences. These include increased rates of poverty among disabled people, widening of the disability employment gap, and worsening health outcomes—outcomes that would run counter to the government’s stated policy objectives. Such effects are not inevitable — but they are foreseeable. They can be avoided if the government chooses to pause and reconsider the approach set out in the Pathways to Work Green Paper. |
The Human Cost of Pathways to Work Under current Personal Independence Payment (PIP) rates (April 2025), individuals receiving the standard rate for daily living would lose £73.10 per week (equivalent to £3,801.20 annually) if their entitlement were withdrawn. Those receiving the enhanced rate would lose £110.10 per week (equivalent to £5,725.20 annually). The proposals in the Green Paper would compound this loss by making the PIP daily living component the gateway to the Universal Credit (UC) health element. As a result, claimants who do not meet the new four-point threshold in a single daily living activity would also lose eligibility for this additional support. For someone currently receiving the standard rate of daily living and the UC health element, the total loss could approach £9,000 per year. For those receiving the enhanced rate and the UC health element, the annual reduction could exceed £10,700. |
Such financial losses cannot be easily offset by earnings. Many people with ME/CFS are unable to work at all due to the nature of their condition, while others are limited in how much they can work or earn. The likely outcome is a significant drop in income for thousands of individuals, leading to heightened financial insecurity among a group already at risk.
Scope’s 2024 estimate of the “Disability Price Tag” – the additional monthly costs associated with being disabled – is £1,067. By comparison, the maximum monthly award under PIP (enhanced rate for both daily living and mobility) is £749.80. Even without accounting for inflation, this represents a monthly shortfall of £317.20. This gap raises serious questions about the adequacy of current social security system, even before any reductions are introduced.
People with ME/CFS, like many others with long-term conditions, are already navigating the challenges of living on a constrained income amid rising costs. Reducing support further on the grounds of financial sustainability, without addressing the ongoing needs of disabled people, risks deepening hardship and widening inequalities in an already strained system.
Passport(ed) Benefits
Personal Independence Payment (PIP) acts as a gateway to a range of other benefits and support mechanisms. A PIP award can entitle recipients to enhanced rates of social security payments, concessions, and services – both in the public and private sectors – that help manage the additional costs and limitations associated with disability.
If the reforms proposed in the Green Paper were implemented, loss of PIP entitlement would also mean the loss of these “passported” benefits. This includes financial enhancements or eligibility for other means-tested support such as: Employment and Support Allowance, Jobseeker’s Allowance, Income Support, Working Tax Credit, Housing Benefit, Council Tax Reductions, and exemption from the Benefit Cap. The loss of a single PIP award can therefore trigger multiple additional losses, with potentially severe consequences for claimants’ financial stability.
The government has estimated that approximately 150,000 unpaid carers could lose their Carer’s Allowance (approximately £4,300 annually) or the Carer’s Element of Universal Credit (around £2,400 annually) as a direct result of PIP reforms. This could have a profound impact on those supporting individuals with severe or very severe ME/CFS – many of whom require daily care but are unable to work or self-fund replacement support. Without adequate financial provision, disabled people may be left without essential care, and the already stretched health and social care system is unlikely to be able to absorb the increased demand.
Beyond financial loss, the withdrawal of passported benefits can have a significant social and psychological impact. For people with ME/CFS – many of whom are housebound, bedbound, or must carefully ration their limited energy – the support provided through PIP and related benefits often makes the difference between social connection and isolation. Loss of entitlement may further restrict participation in community, cultural, or recreational activities, eroding quality of life and independence.
June 2025