Delivery Plan for ME/CFS Published – Research Details

I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed. We know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS, whether that be those with symptoms on the milder end of the spectrum or those with very severe ME/CFS, and everyone in between. This final delivery plan marks an important milestone on the continuing journey to achieving those 3 high-level ambitions.

Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention, Foreword to My full reality: the final delivery plan on ME/CFS

Over 3 years after the process began with the then Secretary of State for Health and Social Care’s announcement on the 12th of May 2022 of a review, and in light of views expressed during a consultation period on the My full reality: the interim delivery plan on ME/CFS, the UK government published its finalised Delivery Plan on ME/CFS on 22nd July 2025 a few days before parliament goes into summer recess and so avoids major scrutiny. The Plan covers

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS

The public consultation elicited over 3,000 responses which the Ministerial Foreword states helped the government ‘firm up and expand on the number and/or ambition of the proposed actions I expect the final delivery plan to deliver in the months and years ahead.’ It will be recalled that the Consultation results were that the Plan delivered on ring-fencing funding, as well as securing more funding and parity of funding with other conditions; wide scope of research; ‘quick wins’ on research to aid those affected, and rebuilding trust with people with ME/CFS.

As Andrew Gwynne MP, then Parliamentary Under-Secretary (Department of Health and Social Care), stated the ambition was that:

The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

Geographic Scope

The Delivery Plan covers England only but both the Scottish and Welsh Governments, and the Northern Ireland Executive have, according to the Plan, “… carefully considered the consultation responses on the interim delivery plan from their residents and what they have heard at the Task and Finish Group meetings and implications for local policy in the devolved nations.”

Managing Expectations

Through answers to parliamentary questions it had already been trailed that the finalised Delivery Plan would:

• align more closely with wider related Government strategies such as the forthcoming 10-Year Health Plan.
• provide additional support to ME/CFS researchers to develop high quality funding applications and access existing National Institute for Health and Care Research and Medical Research Council research funding.
• not introduce ring-fenced funding for ME/CFS research but that applications for funding would still follow normal NIHR/MRC procedures and be subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
• outline additional support the government would offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.

As it transpires the Delivery Plan follows these themes. Much was already announced in advance as part of a parliamentary answer.

What does the Delivery Plan actually offer for research?

A few specific announcements have been made –

1. The NIHR HSDR Programme has funded a new, £1.4 million HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE) which will look at the overlap between ME/CFS and long COVID and explore the costs and effectiveness of different existing healthcare models for both conditions. This study aims to help improve the quality of care for both conditions by developing a national service framework (NSF) for long COVID and ME/CFS, which includes training and resources for specialist services and primary care across the UK.
2. The MRC has awarded £845,000 to PRIME, a new partnership award that aims to build a solid foundation for a permanent, enabling infrastructure for ME/CFS biomedical research by building on previous investment in the DecodeME study.
   
   PRIME aims to co-ordinate and engage researchers by creating at least 15 new research collaborations bringing together researchers from various backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS. It will also strengthen international research networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias being to share data, replicate research and create a shared research standard. In addition, it will fund a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers).
3. The Delivery Plan confirms the launch of a new funding competition for research into the treatment and management of post-acute infection syndromes, including long COVID and ME/CFS by way of an NIHR Application Development Award. Funds will allow researchers to prepare for a larger, more advanced study (a phase 2 platform trial). It will also help them determine the optimal design for that study so that several existing drugs, non-drug treatments, or medical devices can be tested at the same time.
   
   What is promised appears to be couched within a wider envelope of ‘post-acute infection syndromes‘ rather than a measure specifically for ME/CFS.

As such, the Delivery Plan on research claims to set out a roadmap to deliver improvements in ME/CFS research by –

• exploring links with other post-acute infection conditions
• having an ambition to stimulate further research in this area
• building a vibrant ME/CFS research community
• ensuring those with lived experience are at the heart of research
• announcing new research investments

Much of what is written is long on justification and support but short on both money and concrete actions. It is to be queried if the Plan, as written, will deliver on its stated desire to ‘drive change’. In fact, most of the actions are, as feared, focussed on processes rather than being bold in ambition. The Minister acknowledges that some actions require further exploration, scoping and discussion but that the Department is ‘happy to be held to account by the ME/CFS community … to ensure that we make progress against every action’. It recognises that research is inherently gradual and evolving but that the government is ‘.. committed to a long-term vision that supports sustained progress. This includes a commitment to ongoing transparency, monitoring and evaluation’ and that the ‘publication of this plan in no way marks the end of our journey.’

The Plan in itself announces just enough to be of interest but rather reads as a place setter for future decisions. It is to be seen, for example, if it incentivises central funders to engage fully, and to curate, endorse and fund the proposed research initiative backed by ME charities – including ME Research UK – which in form and scope accords with the funders’ needs as to collaboration, patient involvement, multi-disciplinary approach, and not be solely ME/CFS centred.

Generally, the Delivery Plan has been formed to accord with the Government’s 10 year NHS Plan and Bank to Work agenda and aims to conglomorate ME/CFS, long COVID and allied diseases into one linked area in the hope that the move alone solves research questions and absolves the government and funding agencies of guilt.

In this summary, aspirations or qualifications are placed in bold for ease – many of the provisions also signpost existing support rather than anything novel in response to the needs of ME/CFS researchers.

‘Highlights’

1. Announcement of HERITAGE study – overlap with ME/CFS and long COVID,
2. Confirms announcement of PRIME – building consortia.
3. Launch of new funding opportunity with a NIHR Application Development Award focussed on ‘evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS.‘ This opportunity to accelerate learnings and to ‘explore the feasibility of a phase 2 platform trial, and to establish the optimum approach for phase 2 platform architecture that tests multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions and devices’.
   
   This was an item trailed in the parliamentary answer and NIHR has already launched the call. NB NIHR launched ten Application Development Awards to carry out development work prior to research applications, with a requirement for applicant teams to involve Health and Care Professionals (HCP) in 2024.
4. Department and NIHR and MRC will be hosting a showcase event later in 2025 for post-viral condition research including ME/CFS to discuss recent evidence including DeCodeME results.
5. NIHR Innovation Observatory has completed a horizon scan which focused on medicines with a UK licence which might be ready for later phase (in phase 2 or phase 3) clinical trials. 42 clinical trials were identified investigating the effectiveness of repurposed medicines for ME/CFS, long COVID or fibromyalgia.
6. Identify that funders still receive a low number of research applications and further strategic solutions to address this are being developed.
7. Department will monitor ‘ME/CFS funding and support closely, and provide information on NIHR’s annual research spend for ME/CFS as well as the number of research proposals for ME/CFS.
8. Department is committed to working with the community to identify and address barriers to research, with the ambition of supporting and funding more research and capacity building programmes.
9. To maximise the impact of funded research, the Department will work closely with policymakers and the health service to ensure that learnings from research are translated into policy and practice.
   
   

Statements and Signposts

1. Ring-fencing has been rejected as ‘not in the usual practice for research funders (cf ME Research UK comments) and that applications for funding are to be welcomed for ME/CFS research across all NIHR programmes.
2. The NIHR and MRC are stated to be committed to fund high-quality research to understand the causes, consequences, and treatment of ME/CFS.
3. NIHR committed to working with patients, service users.
4. While ME/CFS and Long COVID should not be seen as synonymous, the links between the conditions should be explored. Researchers are encouraged to explore onset after a viral illness or other infection and to take insight from other post-viral conditions and apply to ME/CFS to help develop effective treatments for people with ME/CFS.
5. Reiterated that NIHR has invested over £3.6m in ME/CFS research between 2019/20 and 2023/24 specifically £1.5m for DecodeME and that they ‘anticipate that DecodeME will empower future research by revealing genetic risk factors and facilitating future studies through the provision of an open-source data and sample base.’
   
   The Plan also points out that DecodeME had its funding extended in 2024 to enable its research aims to be completed.
   It will be recalled that during the same period the NIHR and MRC invested over £57m in Long COVID research with over £40m through 2 specific research calls. These figures having already been revealed in a Parliamentary Written Answer.
   
   Interestingly, under Long COVID, the Plan states that the Department is ‘encouraged by emerging findings of potential mechanisms underpinning long COVID, offering potential future pathways to therapeutic options for these patients and we hope to see new insights on ME/CFS emerge from the DecodeME programme in the near future’.
6. Encourage researchers to contact NIHR’s Research Support Service prior to submitting funding applications for tailored support. In the event of an unsuccessful application, researchers to receive feedback from NIHR programme teams and/or the RSS.
7. Reiterated that investigating ME/CFS has been a priority area for NIHR for a number of years.
8. Highlight existing areas of research infrastructure supported by NIHR which is available to researchers such as NIHR Biomedical Research Centres – ‘although these Centres do not necessarily have dedicated ME/CFS teams, several have area of focus that strongly align with ME/CFS research priorities identified by the JLA PSP’.
9. NIHR Research Delivery Network can assist researchers setting up and delivering trials across England. The Network is working with others in advancing workstreams that may be of interest to ME/CFS researchers.
10. All NIHR funding is transparent with NIHR awards publicised on NIHR Open Data and all MRC grants available on Gateway to Research site.

Has progress been made since the Interim Delivery plan?

Since the Interim Delivery Plan was published, and to increase awareness, the Delivery Plan narrates that the following steps have been completed –

1. 5 workshops with research funders to respond to the Priority Setting Partnership Top 10+ priorities
2. Meetings of Task and Finish Group, workshops and sub committee work.
3. Evidence Review of national and international research mapped against the PSP priorities
4. New Researcher Toolkit published.
5. Support on writing grants, research design and methods, and Patient and Public Involvement.
6. Action points are listed under section 4 of the plan (highlights below but detailed in the full Delivery Plan) and narrate which have been completed and which, are still in train.

The actual textual content of the Interim Delivery Plan has been largely replaced by the Delivery Plan but the 4 key problem areas remain and are repeated in the finalised Plan, namely –

1. There is low capacity and capability amongst the research community to respond to research needs in this area.
2. Historically, there has been low awareness of the need and scope for research into ME/CFS across the health and care research landscape.
3. There has been a relatively low amount of biomedical research funded on ME/CFS, compared to the disease burden.
4. There remains a lack of trust between different stakeholders, including a perception of bias, expressed by patient and carer groups , about prioritisation and the peer-review process when applied to ME/CFS research.

Mapping the actions and aspirations within the Plan do they address these 4 key problems?

Delivering a plan for ME/CFS research?

Not yet. The Plan sticks doggedly to the mantra that the issue with ME/CFS research lies in the quality and quantity of suitable applications and that the NIHR and MRC stand ready to fund if only they had the opportunity so to do. This ignores decades of under-investment and inaction by central funders and will do little to convince sceptics that there has truly been a change of attitude within central funders’ minds. The ‘fault’ apparently lies not with funders but with researchers and additional support in writing applications will solve the issues which have affected ME/CFS research for decades. There is certainly no new vision in the Delivery Plan and no new initiative to build structures to attract researchers to work investigating ME/CFS or to incentivise universities and others to invest in creating multidisciplinary research groups and to devote resources to apply for funding.

The largest number of actions are on support for applicants and drawing upon existing infrastructure which is, and has been, available to all researchers. Processes and signposting rather than truly stimulating research. Where there is action it appears to be convenient to move long COVID research along given its funding cuts coupled with the sheer number of those affected and who could be diagnosed with ME/CFS due to their symptom profile.

On funding, the rejection of ring-fenced funding shows a wanton disregard of the progress made in other countries – notably Germany and the Netherlands – which show what can be achieved when funders abandon a passive approach and instead actively stimulate research. In fact, international learnings are absent as the focus appears to be directed solely on DeCodeME and the PSP – initiatives funded by the NIHR and MRC – rather than international progress despite having mapped initiatives globally. Whether this focus will impact adversely UK funding for non DeCodeME research is yet to be seen. The only nod to international learnings is via PRIME but, of course, could be more to do with accessing EU Horizon funding.

In ME Research UK’s response to the proposals contained in the interim Delivery Plan, the charity pointed out that whilst the interim Delivery Plan provided a much-needed review of the global funding landscape (not reflected in the Final Plan) for research into ME/CFS, it fell short in a number of areas, most significantly:

• The central issues facing biomedical research into ME/CFS are already well known, and have been for decades.
• There is no commitment to ring-fence dedicated funding for ME/CFS research, to reflect the disease’s prevalence and severity.
• There are no strategies to keep established researchers in the field and to help them build capacity, or to encourage early career researchers to specialise in ME/CFS research.
• The initiatives appear more about process than results.
• The deliverables are weak.

The Delivery Plan fails on each count. It fails on providing solutions to the 4 key problem areas which the Department itself acknowledged and fails to offer concrete solutions so the errors of the past and to ensure that they are not repeated. It fails to deliver on research terms for those with ME/CFS.

What Next?

The Plan does narrate continuing work – areas where continuing measure of success or future timeline outlined – and these too it will be noted are qualified actions, aspirations, vague deliverables or which cover not just ME/CFS.

Action and action owner	Progress update	Timeline and measure of success
UK Clinical Research Collaboration (UKCRC) Research Working Group has committed to rapid actions which will provide the foundation of evidence generation and insight into the medium and long-term actions	The rapid actions have been completed, and ongoing actions have been identified in collaboration with researchers, charity groups and people with lived experience	Completed Actions were delivered and discussed with the Task and Finish Group
DHSC will support the Research Strategy sub-group to hold workshops with funders, academics and people with ME/CFS on how to develop research questions	Workshops were organised by the Research Working Group members	Completed Workshops were held, all were well attended, and the main issues were considered
DHSC will work with research funders to commission a landscaping review of national and international work underway in ME/CFS	Recent research in ME/CFS was commissioned, shared with the Task and Finish Group and published	Completed We will monitor funding disbursed for ME/CFS closely
The Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR) will raise awareness of research funding opportunities for researchers and highlight research priorities publicly and with decision-making bodies	The ME/CFS Researcher Toolkit was published MRC continues to maintain a funding ‘priority area’ in ME/CFS spanning all funding schemes and continues to engage with potential applicants for funding programmes DHSC hosted a roundtable in September 2024 with the research community and people with lived experience, resulting in a commitment to host a research showcase event to discuss recent evidence, particularly from the DecodeME study	Completed We will monitor funding disbursed for ME/CFS closely
As part of the UKCRC Research Working Group, a charity and patient group collaboration will support funders to raise awareness of mechanisms for effective patient and public involvement and engagement (PPIE) in research	This was incorporated into the ME/CFS Researcher Toolkit	Completed   We will monitor funding disbursed for ME/CFS closely
DHSC will support the Research Working Group to develop case studies of research which show good practice, including effective PPIE	This was incorporated into the ME/CFS Researcher Toolkit	Completed We will monitor funding disbursed for ME/CFS closely
DHSC will support the Research Working Group to engage with the initiatives to educate clinicians and/or practitioners about ME/CFS	Dr David Strain (University of Exeter) contributed to the Research Working Group as well as NHS England’s educational module	Completed See update below for progress on the module
DHSC and NIHR will continue working with the Research Support Service (RSS) to enhance our support offer for potential applicants for ME/CFS research funding	(New action) Working with NIHR to enhance the support offer to ME/CFS researchers	Internal NIHR monitoring on a 12-monthly basis to develop an appropriate process and understand whether researchers are seeking support from RSS
The NIHR will commission an NIHR Innovation Observatory Review of relevant new and repurposed medicines in clinical development for the treatment of ME/CFS	(New action) The research community has provided helpful insights on potential therapeutics and the NIHR Innovation Observatory has completed a horizon scan which focused on medicines with a UK licence which might be ready for later phase (in phase 2 or phase 3) clinical trials	Completed – the report has been published NIHR will consider these insights to develop a new Application Development Award
NIHR and MRC will support researchers to apply for an Application Development Award focused on evaluating repurposed medicines and non-pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS	(New action) In discussion with NIHR, to develop a new Application Development Award to help accelerate the necessary learning to explore the feasibility of a phase 2 platform trial to evaluate repurposed medicines and other non-pharmaceutical interventions for post-acute infection syndromes	Internal NIHR monitoring on how many applications are submitted for the Application Development Award Application Development Award has been launched and welcomes applications until 2 December 2025
DHSC, NIHR and UKRI research will host a joint showcase event to publicise the results from the DecodeME study, as well as highlight important outstanding research questions and encourage researchers to join the ME/CFS and long COVID fields	(New action) In discussion with NIHR and MRC on scope of event and so we can maximise the opportunity to encourage researchers to join the ME/CFS field (capability building)	Expected completion in 6 months – anticipated in autumn 2025 following publication of results from DecodeME study Increase in applications to research funders following public showcase, demonstrating commitment and stimulating interest in post-acute infection conditions research
DHSC and NIHR will commission the HERITAGE research project through NIHR Health Services and Delivery programme to look at the overlap between ME/CFS and long COVID, and explore costs and effectiveness of different existing healthcare models for both conditions	(New action) Work underway to understand current service provision and where there may be gaps	Internal NIHR monitoring and formal publication of findings following research NIHR has funded the HERITAGE study with research findings to be published over the course of the project
The MRC will ensure robust input from ME/CFS research community in UK Research and Innovation’s (UKRI) panel assessment	(New action) Work underway to bring in ME/CFS expertise to MRC panel process where appropriate	UKRI’s monitoring in 6 months
The NIHR, as part of post-monitoring of FDP, will report annually to the Task and Finish Group of appropriate metrics for research applications received and awarded	(New action) In discussion with NIHR on feasibility of reporting metrics on number of applications for ME/CFS research received and awarded	Annual internal reporting to Task and Finish Group as part of post-monitoring of the FDP

Comment

It could well be that a charitable interpretation the Delivery Plan is that it lays the foundation for future research initiatives but after 3 years’ work it does look painfully/disappointingly thin bar encouraging drugs repurposing efforts and funding of both the HERITAGE study (which is stated is to improve health and care services) and PRIME (building on DecodeME) – especially on funding, tractable goals, actual research initiatives, and replicating success from other countries. It manifestly fails to take on board the number one demand of those who responded to the Consultation process – ring-fencing funding, as well as securing more funding and parity of funding with other conditions. Reading the actions – most are process or signposting. Little will encourage new researchers unless the aims are to use the Delivery Plan as a vehicle also to head-off issues in low funding for long-COVID research – hence talk of post-infectious syndromes.

In short, enough for press releases and to be seen to do something but no cause (yet) for celebration.

Reading the Progress Update on Application Development Awards highlight the lethargy (italics our own).

“… to help accelerate the necessary learning to explore the feasibility of a phase II platform trial to evaluate repurposed medicines and non-pharmaceutical inventions for post-acute infection syndromes” is pure Sir Humphrey but the Plan is neither ‘brave’ nor ‘courageous’. NIHR however, has launched the call but this is wider than ME/CFS and it will have to be seen if it results in an award which has the aim of aiding those affected by ME/CFS.

It is good that the Department is ‘happy to be held to account by the ME/CFS community … to ensure that we make progress against every action’ as to account, it must be held. But how?

Post-publication monitoring to a further Task and Finish Group without clear metrics as to success or power to institute change will not lead to transformative change plus will external monitoring of MRC and NIHR processes and decisions re funding be undertaken? Will the Delivery Plan be publicly reviewed and success benchmarked with reports and responses from the Task and Finish Group published? What will success look like – 1 more application for funding, a single successful MRC grant? Will a grant for a post-acute infection syndrome project be counted as a success if its findings could possibly be applied to ME/CFS?

Given the time it took to draft, the work involved from organisations and the effort invested by people with ME/CFS, it does presently look like an opportunity missed and the long grass may await it. It is clear that political will is lacking. Its terms neither ‘boost’ nor ‘drive change’ – one can hope that its implementation will. Nothing in the Plan offers more than a glimmer of hope.

As Sean O’Neill wrote in The Times

Yes, there are warm words aplenty. However, this delivery plan is sorely lacking in detail on how change will be delivered. It is a plan without any actual plan.

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