We urge the government and all parliamentarians to pause and listen to what we have to say before it is too late, and even more people are forced to experience worsening health and destitution.
The ME Association
by Ella Smith, Welfare Rights Consultant, and Paul Smith, Policy and Public Affairs Consultant
Introduction
The government’s press release published on Wednesday, claimed that its planned welfare reforms will “protect the most vulnerable.”
The ME Association strongly disagrees. In fact, the changes outlined in the Pathways to Work Green Paper and new Welfare Reform Bill will harm those in genuine need of support, including people with ME/CFS and Long Covid and the family and friends who care for them.
The government plans to:
- Remove essential safeguards by abolishing the Work Capability Assessment without replacing protections like Regulations 29 and 35.
- Cut the health element of Universal Credit from £97 to £50 per week for future claimants.
- Introduce a new rule that will make Personal Independence Payment (PIP) harder to access – unless someone scores 4 points in a single activity, even if they have a range of needs spread across different areas.
By 2029/30, these changes are expected to remove PIP from around 800,000 claimants. This is a drastic cut. Shockingly, no official impact assessment has been published to show how this will affect disabled people’s daily lives, their health, or their ability to work.
Summary
ME/CFS and Long Covid are considered chronic, complex, and fluctuating* (whereby symptoms are always present, but can range in severity) conditions that have a direct impact on an individual’s ability to function normally leaving them disabled and in need of help and support.
Under the current system for PIP, people can score a minimum of 1 point in several different categories which when combined can meet the eligibility criteria for the Daily Living and/or Mobility components. Under the proposed new rules, to qualify for either the standard or enhanced award, they would need to be allocated 4 points in at least one of the related descriptors.
The ME Association and other charities representing disabled people, are very concerned that people could lose all their support, despite having serious health needs, and being genuinely unable to work. For some, this could mean the loss of PIP and any health-related element of Universal Credit – which could mean a potential reduction in income of around £10,000 a year.
These changes don’t just risk more people becoming impoverished – they risk worsening people’s health, cutting off vital lifelines, making caring an even tougher challenge, and it being more difficult for those who can work to stay in – or consider returning to – employment.
We’re fighting back!
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with current DWP terminology.
The ME Association has:
- been lobbying on these issues since they were announced and has assembled a team of 2 experts (Ella Smith and Paul Jones) to advise on the situation and lead a project directly challenging the proposals.
- published a Position Statement that outlines its concerns.
- submitted detailed evidence to the Work and Pensions Select Committee (that we will share with you next week).
- met with government ministers, other MPs and Peers, to advise them of its position in challenging the reforms (meetings that we will report on soon).
- prepared a full response to the Green Paper (that we will publish in full in July).
- also launched a survey to gather data from people with ME/CFS and Long Covid, about their experiences of welfare benefits and to learn how the proposed changes will impact them.
- We are deeply concerned that disabled people’s voices – especially people with ‘fluctuating’ conditions – are being ignored. That’s why it’s vital that we speak out.
More Detail
The ME Association is deeply concerned by the government’s continued claims that its proposed welfare reforms will “protect the most vulnerable.”
For people living with ME/CFS and Long Covid – many of whom face years trying to cope with a complex disease, fluctuating symptoms, and significant limitations to their ability to function normally – the proposals risk cutting vital support.
While the government claims that the most severely disabled people will still qualify for PIP under the new rules, there are no guarantees this will happen in practice.
ME/CFS and Long Covid remain widely misunderstood by clinicians and assessors, and even today, many people face negative and unfair decisions. The new 4‑point threshold increases the risk of being denied an essential benefit – especially for those who are most unwell and unable to engage with the system without significant support.
As Neil Duncan‑Jordan MP warned in the Westminster Hall debate earlier this week:
The fear among disabled people is that the changes outlined in the ‘Pathways to Work’ Green Paper … amount to piling more cuts on to an already broken system.
He also highlighted that “the process of claiming support can also be extremely complicated and confusing, and that often leads to individuals incorrectly filling in the forms or finding the process too difficult to even start.”
It’s well established that many eligible disabled people never apply for PIP at all – especially when their disability limits capacity to navigate the process. The proposed changes risk widening that gap even further.
Changes to Personal Independence Payment (PIP), including the ‘4-point rule’ and the replacement of the Work Capability Assessment (WCA) with the new PIP assessment and criteria, seem likely to result in many claimants losing access to PIP and the health-related elements of Universal Credit.
The protections currently built into the WCA – particularly Regulations 29 and 35 – are crucial for people whose health would be seriously harmed by work or work-related activity. These safeguards are not included in the PIP assessment and have not been replaced.
Regulations 29 and 35 provide vital safeguards within ESA for people who may not meet points thresholds but would face serious harm if required to work or prepare for work. These protections are especially important for people with ME/CFS and Long Covid, whose symptoms can worsen with exertion and are subject to relapse. Maintaining health often depends on careful management – and without these regulations, individuals could be forced into activities that cause lasting deterioration.
The government’s press release claims that the increase in awards of PIP have largely come from people with mental health conditions that have developed during or since the pandemic. But the proposed increase to eligibility criteria will impact everyone with a disability who is legitimately entitled to the benefit regardless of their primary medical diagnosis or comorbidities.
PIP is the hardest benefit to obtain especially for people with ME/CFS and Long Covid and other ‘fluctuating’ and chronic conditions. Even now, it can be very challenging trying to convince assessors that an individual’s condition is unlikely to improve, or that functional incapacity can vary markedly, or that they have not stablised or improved despite having had the condition for many years.
PIP relies on medical evidence – which can be another challenge to obtain as these conditions are still not understood by the medical profession – and assessment by private sector companies contracted by the DWP. The process is incredibly arduous especially when an individual is likely to be severely impacted by the disease at a time when they need support the most.
Even before these proposed ‘reforms’ were introduced, the system for people with ME/CFS and Long Covid was very unfair. To deny hard-won benefits in the way that is being proposed, which was originated by a desire to save £5bn, is wrong. We still don’t know how the government arrived at the 4-point rule, or why they haven’t published an impact statement.
We are also concerned that some of the most serious proposals have not been consulted on. It is unclear how the government believes these changes will support more disabled people into work or to live independently — especially when support is being removed without appropriate alternatives in place.
Survey
The ME Association launched a national survey to gather direct testimony from people affected by these changes. Evidence that we will use as we engage with more politicians and in the Green Paper response at the end of this month.
The survey is open to people with ME/CFS, Long Covid, and those who care for them. We believe disabled people must be at the heart of this debate — and the survey is one way of making sure your voices are heard.
In every aspect of the work we are doing, we are calling for reform that is led by lived experience, grounded in evidence, and shaped with disabled people — not imposed upon them.
We urge the government and all parliamentarians to pause and listen to what we have to say before it is too late, and even more people are forced to experience worsening health and destitution.
Further information
- The ME Association’s Position Statement on the Proposed Welfare Reforms | June 18, 2025
- Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms | June 19, 2025
- The ME Association: GOV UK Announcement: Welfare bill will protect the most vulnerable and help households with income boost | June 19, 2025
- The ME Association: Parliamentary Debate: Disabled People in Poverty | June 19, 2025