Dear Tessa,
As you will know, it is now over a year since the publication of the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) final delivery plan.
Therefore, I would like to provide you with an update on some of the work that has taken place since the plan's publication, including successes and some of the challenges we have faced in our implementation to date.
A version of this update will also be shared with key patient groups and clinicians who have been involved in the plan's delivery. I am extremely grateful for the continued support, participation and critical engagement from both members of the APPG and our wider group of valued stakeholders, and look forward to further collaboration as we continue to support people with ME/CFS and their loved ones together.
The plan focuses on three main areas: boosting research, improving attitudes and education, and bettering the lives of people with this debilitating condition.
Research
We have made significant progress on the research actions in the plan, against a backdrop of £8.19 million funding for research into ME/CFS through the National Institute for Health and Care Research (NIHR) and Medical Research Council (MRC) between April 2020 and March 2026.
In September 2025, the Department hosted a roundtable with the research community and people with lived experience, which resulted in a commitment to host a research showcase event to discuss recent evidence, particularly from the DecodeME study.
This showcase event for post- acute infection conditions research, including ME/CFS and long Covid, was hosted on 6 November 2025. The event included speakers from a range of disciplines, including researchers, clinicians, people with lived experience, and ME/CFS charities, and was attended by researchers, government officials, and NIHR and MRC representatives.
Presentations covered patient priorities for future research, immune mechanisms and post-viral conditions, early findings from the DecodeME study, and support available from MRC and NIHR to develop future research proposals. The NIHR and MRC are working together to build research capacity.
The MRC has awarded £845,000 to researchers at the University of Edinburgh towards PRIME, a new partnership award that aims to build infrastructure to enable ME/CFS biomedical research. The NIHR Research Support Service (RSS) is providing support for applications for ME/CFS research funding. The RSS has supported the development of over twenty research applications for funding from NIHR and other research councils since the final delivery plan was published.
This support has included advice on research methodology and how best to engage patients and the public. The RSS, together with the MRC, is planning a national ME/CFS and long Covid research capacity building workshop in late 2026 or early 2027. This will include advice on writing grant applications and building research capacity in this field.
On top of this, the NIHR has funded the £1.4m HERITAGE research project through the NIHR Health and Social Care Delivery Research (HSDR) programme. HERITAGE will examine the overlap between ME/CFS and long Covid to explore the effectiveness of different healthcare models for both conditions. More information on the HERITAGE study can be found here:
https://fundingawards.nihr.ac.uk/award/NIHR174857.
The NIHR has also funded two projects to investigate the feasibility of a new clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including long Covid and ME/CFS. We have also gone beyond the actions in the Final Delivery Plan, investing £4.75m in SequenceME, which will create the first high-resolution genetic map for ME/CFS.
This builds on the Government's previous support for DecodeME
Attitudes and education
We have made good progress on actions looking to improve attitudes and education towards people with ME/CFS. NHS England has developed a four-module e-learning programme on ME/CFS, three modules of which have universal access, while the fourth is for clinicians and healthcare professionals only. Module 1 is an introduction to ME/CFS, module 2 relates to primary care, and module 3 addresses severe ME/CFS, including very severe.
Module 4 includes more detail on severe and very severe ME/CFS for clinicians only. The modules have, at the last count in June, been accessed by over 650 people from a range of backgrounds, including healthcare professionals, carers, and people with lived experience. We are working with the Royal College of Physicians and the Medical Schools Council to further promote awareness of the programme.
The modules have all received high ratings, with the overall programme having recently been nominated for a Learning Technologies Award, and DHSC and NHS England continue to monitor feedback to ensure that this e-learning continues to be relevant, compliant with National Institute for Health and Care Excellence (NICE) guidance, and detailed. It is thanks to feedback received from stakeholders that we developed a public- facing module on severe ME/CFS, which had previously only been accessible by clinicians.
I trust this provides you with assurances over our ongoing responsiveness to stakeholder feedback, something I am keen to embed in our work moving forward. One aspect of the plan's delivery I am particularly encouraged by is the genuine collaboration and support being provided by patient groups, such as on the development of a Language Matters guide.
This work is being led by Forward ME with support from the Department. This guide is now with NHS England, and we are hopeful that it will be published in due course. I am grateful for the time, effort and insights provided by our stakeholders, which will be essential if we are to meaningfully shift the dial on attitudes towards people with ME/CFS. We have additionally been working towards an awareness initiative, which is intended to improve awareness among relevant sectors about ME/CFS as a condition, common symptoms, and how to engage with people with this condition.
This will complement the Language Matters guide, and officials are exploring how to develop a meaningful and impactful initiative. Finally, the British Psychological Society (BPS) has concluded recruitment for volunteers to help develop good practice guidelines. There are 15 BPS members supporting the development of the guidelines, alongside two experts from ME/CFS charities, representing a range of specialisms.
A survey of people with ME/CFS, receiving over 800 responses, has now closed and results are being analysed. It is hoped that the survey results will highlight the multiple ways psychologists can support people with ME/CFS, including building trust, supporting adaptations to care, and helping process trauma.
Two focus group sessions have also been undertaken. Drafting of the guidelines is now underway, and genuine co-production has remained a key priority.
Living with ME/CFS
Another example of the collaboration which is coming to define the plan's implementation is on the development of a template service specification.
The Department, working closely with experts from NHS England, has developed a template service specification for mild, moderate and severe ME/CFS. We have engaged extensively with the representatives from ME/CFS organisations, clinicians, and people with lived experience to ensure that this work will meet the needs of the community. The development of this template has also included engaging with specialists on children and young people's health, to help shape the direction of travel for pathways through the healthcare system.
The template is intended to further support healthcare commissioners and providers to understand the needs of people with ME/CFS, and how to commission appropriate, NICE- aligned services. Following consultation with the services sub-group, the scope of the template was expanded from only mild and moderate ME/CFS to also include severe ME/CFS, again demonstrating our commitment to listen and act as we progress the actions in the plan.
Once completed, the template will be disseminated to integrated care boards. One area of work where there remains significant interest is the delivery plan's action to explore whether a specialised service for very severe ME/CFS should be commissioned. Any recommendation to Ministers will need to be informed by appropriate clinical, commissioning and operational advice, and by the future arrangements for commissioning following NHS England transformation.
Ultimately, the decision to commission a specialised service rests with the Secretary of State for Health and Social Care and the question of whether a specialised service should be prescribed for very severe ME/CFS remains under active consideration. We are keen to work collaboratively with patient groups and utilise their insight and expertise. Should there be opportunities for patient groups to support in either evidence-gathering or service design, we will communicate this directly with the ME/CFS Stakeholder Engagement Group.
I would once again like to express my sincere thanks to all those who have supported the final delivery plan, whether this is through directly working with the Department or through the opportunities for challenge and conversation afforded to us across both Houses.
Yours sincerely,
james
JAMES FRITH MP
PARLIAMENTARY UNDER-SECRETARY OF STATE
FOR HEALTH INNOVATION
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