AI Summary of Westminster Hall Debate on Government Support for People with ME 

UK Parliament – 19 November 2025 

On 19 November 2025, MPs held a debate in Westminster Hall on Government support for people with myalgic encephalomyelitis (ME) and ME/CFS. The debate was led by Tessa Munt MP (Liberal Democrat, Wells and Mendip Hills), with contributions from MPs across parties and a response from Health Minister Ashley Dalton.

Credit: Broken Battery

We have used AI to assist in summarising the Westminster Hall debate transcript and to provide the key points covered here.

1. How MPs described the current situation 

MPs repeatedly stressed that: 

• ME is a serious, multi-system physical illness, not “just tiredness” and not a psychiatric condition. 
• The most severely affected receive the worst level of care and support, often confined to dark rooms, unable to tolerate light or sound, often at risk of malnutrition and inadequate care. 
• Estimates now suggest:
  • At least 400,000 people in the UK with ME, and
  • Around 1.35 million people with ME or ME-like symptoms when those with long Covid who experience post-exertional-malaise is included. 
• Women are around five times more likely than men to develop ME.
• ME has a huge economic cost:  
  • A 2014–15 study put the cost at £3.3 billion per year based on 260,000 patients. 
  • MPs argued that with more people affected and inflation, the cost is now likely £7–20 billion per year, yet the Government has not properly modelled or costed this.

Several MPs shared harrowing stories from their constituents: 

• People bedbound for years, tube-fed, unable to hug their partners due to pain and sensory sensitivity. 
• An NHS nurse with ME who cannot play with his children and faced a nine-month wait for an NHS appointment, forced to consider private care. 
• Young people being told they’re “just anxious” or “don’t want to go to school”, and being pushed into graded exercise therapy, which made them worse. 
• Some patients so fearful of hospital care (because staff do not understand severe ME) that they delay seeking emergency help, even when dangerously ill. 

MPs also highlighted two recent Prevention of Future Deaths reports related to severe ME (including Maeve Boothby O’Neill and Sarah Lewis), which concluded that current NHS care is dangerously inadequate and can contribute to deaths from malnutrition and neglect. 

2. Criticism of the Government’s ME/CFS Delivery Plan 

The Government’s final ME/CFS delivery plan, published in July 2025, was welcomed as a starting point – but almost every speaker said it falls far short of what is needed. 

Key criticisms: 

• No substantive new funding is attached to the plan, despite its ambitions. 
• Research funding is tiny: 
  • MPs estimated around £10 million in ME research over 12 years – roughly 60p per person per year. 
  • This was contrasted with: 
    • £50m ring-fenced for motor neurone disease, 
    • £50m ring-fenced for cardiovascular research, 
    • £10 billion on unusable PPE, and 
    • £125m on a bat tunnel for HS2. 
• Germany was held up as a contrast: 
  • The German Government has launched a “decade against post-infectious diseases” and committed €500 million (~£440m) over 10 years for ME and long covid research. 
  • MPs asked why the UK is not making a similar, strategic, long-term commitment. 
• The plan lacks clear accountability and deadlines: 
  • No clear mechanisms to measure whether anything actually changes. 
  • The charity Action for ME have said they are worried the plan will have little real-world impact without concrete implementation, timelines, and accountability. 

3. Key asks from MPs 

Across parties, MPs called for: 

a) Specialist care

• A nationally commissioned specialist NHS service very severe ME, including: 
  • Expertise in nutritional failure and tube-feeding, 
  • Clear, safe pathways for hospital care, 
  • Protection from harmful interventions. 
• Immediate interim measures while a full specialist service is developed: 
  • For example, a national advisory group clinicians can consult in complex severe ME cases. 
  • A systematic review of deaths related to ME to learn lessons and prevent more tragedies. 
• Better training for all clinicians, including GPs, hospital doctors and nurses, so patients are believed and cared for safely. 

b) Serious investment in biomedical research 

• Building on the DecodeME study (which has found distinct genetic signals linked to immune and neurological pathways in people with ME).
• A strategic, research programme for ME, similar to what has been done for MND and cardiovascular disease. 
• Support for a post-infectious disease research hub and long-term funding to keep early-career and senior researchers in the field. 

c) Support for children, education, and social care 

• Better awareness and adjustments in schools, so children and young people with ME can access education flexibly without being pushed beyond their limits. 
• Ensuring parents and carers are supported, not blamed. 
• Proper access to social care and respite for families who have put their lives on hold to care for someone with severe ME. 

d) Fairness in the benefits system 

• Recognition that ME is a fluctuating, energy-limiting condition, and that pushing people beyond their limits can cause long-term harm. 
• Serious concern about welfare reforms, including: 
  • Replacing new-style ESA with a time-limited unemployment insurance, 
  • Abolishing the Work Capability Assessment and losing crucial safeguards for people who would be harmed by work or “work-related activity”. 
• MPs warned that changes risk increased poverty, dependence, and even domestic abuse, particularly for women with ME who rely on their partner’s income. 

4. What the Minister said 

Health Minister Ashley Dalton: 

• Acknowledged the reality and severity of ME/CFS, admitted that people have faced stigma, disbelief, and inconsistent care, and said this is unacceptable. 
• Repeated that the final delivery plan is “the beginning, not the end” and that not all proposals were included, but they can still be considered in future. 
• Accepted invitations to meet with: 
  • Tessa Munt MP, 
  • Jo Platt MP and the All-Party Parliamentary Group on ME, and 
  • Other stakeholders. 
• On research: 
  • Highlighted DecodeME’s early findings of genetic differences linked to immune and nervous systems. 
  • Referred to new funding for repurposed treatments and the PRIME infrastructure project. 
  • Said the NIHR and MRC recently co-hosted a post-infection conditions research showcase (including ME/CFS and long covid) and are considering next steps. 
• On services: 
  • Confirmed that work has started with NHS England to co-design resources for mild and moderate ME/CFS services. 
  • Confirmed that the Department is exploring a specialised, prescribed service for very severe ME/CFS and that this work will continue despite organisational changes to NHS England. 
• On training and awareness: 
  • Announced an NHS e-learning programme on ME/CFS for all healthcare professionals. 
  • Promised a public awareness initiative and engagement with schools, employers and social care. 
• On cross-government work: 
  • Said the Department of Health is working with the Department for Work and Pensions and the Department for Education, including in the context of the Timms review of welfare reform. 
• She ended with a direct message to people with ME/CFS: 
  “We hear you; we value you; we believe you; and we are committed to making the system work better for you and with you.” 

However, the Minister did not commit to: 

• New, strategic research funding on the scale called for by MPs, or 
• A definite timeline for commissioning a specialist service for very severe ME.