The Westminster Hall debate which was held on 19th November 2025 in Westminster Hall and which was entitled ‘Government support for people with myalgic encephalomyelitis’ included a number of highly pertinent questions by the instigator of teh event – Tessa Munt MP
Ms Munt, through her X feed has collated her questions voiced in the debate and submitted to The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton) The answers should prove illuminating and ME Research UK notes that many of these reflect comments the charity has made – especally in light of the deficiencies in the Delivery Plan, highlighting German Federal funding, and need to attract new researchers into ME research (NB our newest Call for PhD-level researchers).
The queries are worth quoting in full (queries in bold italics)-
Westminster Hall Debate – ‘Government responses to ME’
Consolidated questions put to Minister Ashley Dalton by Tessa Munt MP
- Economic Impact of ME
The most recent estimate of the economic impact of ME was for 2014/15 based on a much lower estimate of those living with ME or ME-like symptoms. Given the significant increase in numbers and inflation over the period, and the government’s critical concerns at the impact of ill-health on the economy, will the government commission an economic assessment (and the necessary demographic modeling to inform this) to inform investment decisions on ME?
2. German government Investment or EUR 500m into post-infectious diseases such as ME
In Germany. an estimated 1.5 million people are living with ME or Long Covid. The German government has rightly recognised post-infectious diseases such as ME as ‘one of the greatest public health challenges of the 21st century. Last week it committed 500 million Euros around £440m – over the next decade into research to understand the causes of post infectious diseases and to develop treatments. Can the Minister confirm whether Ministers at the Department of Health and Social Care have discussed this recent funding announcement and the logic behind it?
3. Specialist provision for those with very severe ME
3.1 Commissioned specialist services
The Final Delivery Plan committed DHSC and NHS England to “explore’ ·whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS – and I hope the Secretaty will do the right thing and commission this service. Can the Minister clarify what progress has been made in commissioning this service?
3.2 An Immediate Interim solution
Will the minister commit to working now with groups like #ThereForME to develop an immediate interim solution until the long-term, service is up and running – for example. through the convening of a national advisory group to advise in these cases. and undertaking a full review of lessons learned from ME deaths? And can the Minister clarify what data is being collected to better understand the number of those with ME who are affected by life-threatening complications?
4. Research
4.1 DecodeME
Can the Minister explain what plans are in place for future funding to capitalise on what has been achieved so far through the DecodeME research?
4.2 Building UK research capacity for ME
What are the indicators of success set for the recent NIHR/MRC joint showcase event intended to stimulate research interest and how will those be monitored?
What is the plan to stimulate interest in research if it becomes clear that this showcase event has not been sufficient, especially that the critical issue is secure substantive long-term finance to encourage researchers to build a career in the field?
4.3 Provision of ring-fenced funding for ME research through open competition
Whilst the bulk of NIHR and MRC funding is provided through open calls for thematic approaches to research, there are significant examples of open calls for specific conditions or situations where related considerations justify this. Historical funding imbalances mean that it is not realistic to expect ME researchers to compete in open thematic calls with researchers of conditions which benefit from more advanced research and much stronger institutional capacity. Given the recognised lack of capacity in ME research, why is there not openness to also recognise ME as a special case in the same way, as for example, the £50m call in June 2025 to develop research capacity and collaboration, and implement research, on cardiovascular diseases, especially in areas of high prevalence but underdeveloped institutional capacity?5. Department for Education engagement in the Final Delivery Plan
The Final Delivery Plan acknowledges the need for access to education and improved life chances among children and young people with ME. But while this is in theory a cross government plan, engagement from the Department for Education has been extremely limited. Can the Minister outline what engagement has taken place so far? And can the Minister commit to speaking with colleagues in the Department for Education to ensure they will engage with the Delivery Plan moving forwards, and that they will ensure that children and young people with ME receive appropriate accommodations?
Tessa Munt MP
21 November 2025
