Tessa Munt MP writes to new Minister for Health Innovation about ME/CFS

James Frith MP
Parliamentary Under-Secretary of State for Health Innovation
Department of Health and Social Care
London SW1H OEU
Our ref: TM17798

14th August 2026

Dear James,

Myalgic Encephalomyelitis (ME)

Congratulations on your appointment as Minister for Health Innovation. As Chair of the APPG on ME, I understand that ME, along with other infection associated chronic conditions, falls within your portfolio.

Given the numbers affected, and the length and extent of their suffering, ME represents a significant burden to our country at personal level, to society, and to our economy. However, the government's response, the Final Delivery Plan launched in July 2025, is widely seen to lack ambition and the dedicated resources needed to address such a significant issue for so many. As you take office, I hope very much that you will take inspiration from the Prime Minister's vision to bring back hope. There is no doubt that at present we are all paying for the failure over successive governments to acknowledge the needs of all those affected by ME. It is time for a fresh start, with investment to address their needs, to enable them to lead healthier lives and make the contributions to our country that they have dreamt of for so long.

ME an introduction

ME is a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients”. I am struck by the numbers affected, the length and extent of suffering, and the multiple ways in which people with ME continue to be let down by the State. Indeed, ME remains one of the health injustices of our time.

The two UK major charities estimate that 1.35 million people in the UK live with ME or ME-like symptoms (with 80-85 percent of these being female), nearly 40% more than those living with dementia. NICE recognises that 25% of those with ME will be severely affected. Action for ME and the 25% ME Group recently published a hard-hitting report into Severe ME, building upon an APPG on ME Inquiry. To quote from my Foreword to that report:

[Those living with severe ME] are among those with the worst quality of life in our society. Many are confined to darkened rooms, unable to tolerate light, sound, touch, or even the basic exertions required to communicate or even manage food and water. Yet despite this extraordinary level of need, they are too often excluded from the very systems designed to support them. Healthcare services don't accommodate the specific needs of those with severe and very severe ME, to the extent that trying to use these services may be harmful, making them effectively inaccessible. Social care is insufficient and inflexible. Education systems struggle to respond appropriately. Across all sectors, a lack of knowledge and understanding continues to drive stigma, disbelief, and, in some cases, decisions that actively harm'.

As recovery from ME is uncommon and the distinct peaks of onset are during adolescence and in the mid-thirties, many individuals experience prolonged ill-health across their prime years, creating a significant personal, societal and economic burden. It is not surprising then that a very recent study in Germany indicated that the economic burden of ME represented 0.73% of GDP, with a similar, but separate contribution from Long Covid, both largely due to reduced workforce participation and productivity losses. What is concerning in this study is that the economic burden of ME is increasing over time given low levels of recovery alongside continuing new cases, and deterioration from moderate to severe ME.

Making a fresh start-five issues for immediate investment

It is time then for investment in ME commensurate with its cost to our country. As a start, I'll outline five areas in which there have been developments since the launch of the Final Delivery Plan, pointing to initial confidence building measures for a community that has felt abandoned, just clinging to hope, for too long. I will write further on each shortly.

1. Data – getting better numbers
   The estimate of 1.35 million living with ME is itself the sum of two estimates and so serves only as a useful ballpark figure. However, given its magnitude, it should trigger a move to establishing a better understanding of the scale and demography of ME to provide the foundations for better planning and understanding the true economic burden. The use of SNOMED codes within the NHS should provide this information, but there is significant work to be done so that those with ME present to GPs and are captured, to ensure consistency of coding for those with ME, and that data is correctly aggregated.
2. Understanding the economic cost to the UK
   The most recent estimate of the economic burden of ME on the UK, dates from 2017 and relies on data from 2014/15. This predates the significant increase in those with ME following COVID and doesn't reflect high inflation in the period since. The German studies published in 2025 (and updated in 2026) highlighted the significant contemporary cost of ME and Long Covid, providing the basis for government to invest EUR 500 million in research. Given the scale of ME, and undoubted cost, the UK urgently needs a similar study to inform investment decisions ahead of the next spending round.
3. Research to develop diagnostics and treatment
   With the exception of Germany, across the West, ME has one of the lowest levels of investment in research relative to disease burden for any health condition. The UK government is no exception, the Final Delivery Plan had new commitments of only £2.2 million in research funding, followed by £4.75 million for Sequence ME in March 2026. And yet the UK is a world leader in unravelling the genetics of ME. This has already confirmed that ME is an organic disease and critically points the way to the development of diagnostics and treatment.
4. Changing detrimental attitudes, knowledge and practice across the NHS
   Action for ME's 2025 Big Survey gathered data from more than 5000 people living with ME and/or Long Covid. Initial results painted a bleak picture. When asked to describe their experiences of seeking NHS healthcare for their ME, more than half said that they had been disbelieved by an NHS healthcare professional. One in three had been made to feel that their ME was their own fault, and almost 40% had an encounter with a clinician that was traumatic or traumatising. Sadly, my postbag on ME bears this out. The full results, due to be released in September, will describe an NHS that has failed those with ME. Indeed, many with ME actively avoid contact with the NHS because of well- founded patient safety issues, and an awareness that too many languish with inappropriate care.
   The Final Delivery Plan commitment to producing a set of e-learning modules for NHS staff has been realised, but the evidence is that uptake and completion is poor, and there appears to have been no evaluation of impact. Clearly, there is a long way to go to address underlying attitudes, knowledge and practice across the NHS, and this must go further and deeper than just offering these modules if there is to be a fundamental improvement in the experience of those with ME.
5. Moving at pace to provide a national specialist service for very severe ME
   The Final Delivery Plan commitment to explore whether a national specialist service for very severe ME should be set up was widely welcomed. There was then consternation across the ME community at the news in March 2026 that this exploration was to be paused until April 2027 due to the uncertainties associated with the planned abolition of NHS England and changes to ICBs. It will be critical to this process that a clinical committee is convened to provide recommendations to the Secretary of State. It would be an important confidence booster if this committee could be put in place now so that it may start work as soon as the restructuring allows.
   

Appropriate investment in ME could transform the lives of more than a million people, to bring hope and long dreamed of contributions. I hope very much that we may have the opportunity to meet soon to discuss this, perhaps after the launch of the Big Survey results in September.

Kind regards,
Tessa Munt
Member of Parliament for Wells and Mendip Hills
Chair, APPG on ME