Welfare Reform: The Universal Credit Bill – Why It Matters to People with ME/CFS and Long Covid 

By Ella Smith, ME Welfare Rights Consultant – Welfare Reform Project

The Universal Credit Act 2025 – #ListenToME

After Tuesday’s chaotic vote, MPs are debating dozens of amendments to the Universal Credit and Personal Independence Payment Bill, which is at the committee stage.

These will then be voted on at the next stage of the Bill (the Third Reading, scheduled for 9th July). The amendments could significantly shape how new disability benefit rules affect people with ME/CFS, Long Covid, and other energy-limiting conditions.

Background: What’s This Bill About?

The government’s original Bill proposed major reforms to both Universal Credit (UC) and Personal Independence Payment (PIP), including:

• Replacing the Work Capability Assessment (WCA)
• Changing eligibility rules for the UC health element (LCWRA)
• Tighter PIP criteria (requiring 4 points in a single activity)
• An overall shift towards conditionality and “support into work”

However, after significant public pressure—including from the ME Association—some of the most controversial proposals are now being walked back, at least for now.

What's New: The July Amendments

This week’s amendment paper contains 17 government amendments and 3 new clauses from backbench MPs, grouped around four key areas:

1. Inflation Protection for Some Claimants

The government has introduced a legal duty to increase LCWRA and ESA amounts in line with inflation (CPI) until 2029–30.

This applies only to a protected group:

• People already receiving the LCWRA element before reforms take effect (“pre-2026 claimants”)
• People meeting “severe conditions criteria”
• People who are terminally ill

This protects existing claimants from cash losses—but new claimants who don’t meet the new criteria may lose out.

Scrapping the PIP Clauses

All PIP-related sections of the Bill are now being removed. This reflects a major government U-turn following widespread concern over the impact on disabled people. The name of the Bill is changing to the Universal Credit Act 2025 to reflect this.

Delaying Implementation Until Safeguards Are Met

New Clause 2 (NC2), tabled by Steve Darling MP, proposes that most of the Bill’s reforms cannot take effect until seven key documents have been published and reviewed by Parliament. These include:

• A full consultation report with disabled people and carers
• An impact assessment on poverty and health
• The final PIP review
• An Office for Budget Responsibility (OBR) analysis of employment impacts
• A 21-day parliamentary scrutiny period

This clause gives MPs the chance to scrutinise the evidence before any changes are implemented, helping to prevent rushed or harmful reforms. The ME Association strongly supports NC2 as a common-sense safeguard that prioritises transparency and accountability.

This would allow for parliamentary scrutiny before changes are rolled out.

Assessing the Impact on Carers

New Clause 3 requires a comprehensive report on how the reforms affect carers, including those currently receiving Carer’s Allowance.

Spotlight: Amendment 17 – Fluctuating Conditions

Among all the changes, one quietly powerful amendment stands out: Amendment 17, tabled by Graeme Downie MP and colleagues, which reads:
“or (ii) applies to the claimant as a result of a fluctuating condition, such as Parkinson’s or multiple sclerosis.”

This proposed change would insert an explicit reference to fluctuating* conditions into the criteria for the protected LCWRA amount.

*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.

Why It Matters

People with ME/CFS and Long Covid often experience:

• Debilitating fatigue (that is worsened by activity and not significantly relieved by rest)
• Post-exertional malaise (a dramatic worsening of symptoms after activity)
• Unrefreshing sleep or sleep disturbance (or both)
• Cognitive Dysfunction (difficulties & problems communicating and with short-term memory)
• Orthostatic intolerance/PoTS (dizziness, fainting, nausea, on standing or sitting upright)
• Periods of severe disability that may fluctuate over days, weeks, or months

These symptoms can be profound and disabling, but for some individuals the unpredictable pattern of severity and impact often leads to the combined impact of symptoms being misunderstood or downplayed in standard benefit assessments.

By including “fluctuating* conditions” explicitly in the Bill:

• Parliament would acknowledge the reality of these complex illnesses
• Claimants with fluctuating conditions (like ME/CFS and Long Covid) could have a clearer route to protection
• DWP decision-makers would be guided to apply the criteria more fairly

Creating Equity in Eligibility

Without this amendment, there’s a risk that people with ‘fluctuating conditions’ could be excluded from the protected group—not because they’re less ill, but because their symptoms are less visible or consistent.

We know from lived experience that individuals can experience relatively ‘good days’ but that they often come at the cost of terrible crashes or even relapses. However, many claimants under the current system are penalised for experiencing this limited period of mild symptoms.

It is our hope that the amendment will make it fairer for people with ‘fluctuating* conditions’.

The ME Association

• Welcomes the government’s decision to protect existing LCWRA and ESA claimants from real-terms cuts.
• Supports Steve Darling’s pre-commencement safeguards, ensuring transparency before reforms take effect.
• Backs Amendment 17 to ensure fluctuating conditions like ME/CFS and Long Covid are not excluded.
• Remains concerned that post-2026 claimants who don’t meet a narrow “severe conditions” test could still lose thousands of pounds per year.

This Bill is moving fast—too fast, in our view—for changes that could push thousands of disabled people deeper into poverty. But Amendment 17 gives us a chance to build at least some possible protection for our community before the rules are finalised.

What You Can Do

• Share our campaign using #ListenToME by reposting on social media
• Write to your MP and ask them to support Amendment 17 and NC2.
• Tell your story: if you live with a fluctuating condition, your voice is crucial in helping MPs understand why this amendment matters. Explain what the unpredictability of living with ME/CFS or Long Covid is like for you when you write to your MP. If you have the energy, please try to personalise your letter with details of your life and the difficulties you have.
• The ME Association is committed to fighting for fair, evidence-based reform that reflects the real experiences of people with ME/CFS and Long Covid.

Ella Smith
Welfare Rights Consultant,
The ME Association

Information

• Proposed Amendments and decision progress
• Details of proposed clauses and amendments
• Stages of the Bill

Further helpful links

• The ME Association: Welfare Reform: Keep writing to your MP! | July 3rd, 2025
• The ME Association: Welfare Reform: One Major Win, More Work Ahead | July 2nd, 2025
• Disability Rights UK: Government Avoids Welfare Reform Bill Defeat After Last Minute PIP Concessions | July 2nd, 2025
• The Guardian: How did your MP vote on the welfare reforms? | July 1st, 2025
• The ME Association: Work and Pensions Select Committee Submission  | July 1st, 2025
• The ME Association: DWP publish a press release outlining additional details for UC and PIP | July 30th, 2025
• The Guardian: Extra cost of being disabled in UK to rise by almost 12% in five years, says Scope report | June 30, 2025