Stocktake Unveiled: Uncovering NHS Inaction on Long Covid and ME/CFS

Report reveals systemic neglect, missing data, and vanishing services — raising critical questions about accountability, reform, and the future of care in the UK.

The Introduction

There has been considerable anticipation and community interest in the proposed Long Covid and ME/CFS stocktake commissioned by NHS England—and resulting chagrin when Ashley Dalton MP stated:

However, we have obtained a copy. Due credit and thanks must go to Sally Lambert, a member of the community, who submitted a Freedom of Information (FOI) request and shared the resulting documents with us. This stocktake is critical for accountability and enables campaign groups and advocates to move forward.

The Background

The stocktake was initiated in response to Coroner Deborah Archer’s report in the Maeve Boothby O’Neill inquiry. This is evidenced in a parliamentary question from Alison Bennett MP:

The response, from then-Minister for Public Health and Prevention Andrew Gwynne MP, was:

The Stocktake

For transparency, we received two documents: the Board Report for ME/CFS Services and the Long Covid Stocktake. There is no separate ME/CFS stocktake - relevant information can only be inferred from the Board Report. You can access the original documents on our website - LINK HERE

The Board Report outlines the original intention of the stocktake:

Background (Sept 2024): Quality and Performance Committee requested a more “accurate, in-depth overview of the position of Post-COVID services across England.” Extended to include ME/CFS in November 2024.

Action required: Consider the relative priority of Long Covid, ME, and CFS services and whether further action and investment are required.

In essence, the purpose of the stocktake was to evaluate the priority of these services and determine whether further action and investment are needed. But does the stocktake reflect a sense of urgency within NHS leadership?

The responsibility lay with the regional Integrated Care Board (ICB) medical directors. Yet low compliance suggests a lack of urgency. Only 14 out of 42 ICBs in England responded regarding Long Covid services (32%), and an even worse response came for ME/CFS—only 8 responses (19%).

Therefore, any data we analyse must be seen as incomplete and insufficient to fulfil the report’s original purpose. NHS England states this clearly:

There was a low response rate among ICBs; therefore, the data only gives an indication of the current state.

The Board Report also notes that the Clinical Post Covid Society conducted its own survey, published in December 2024. This data has not been made publicly available, but we have requested it from CPCS and will provide updates when possible. However, the Board Report does reveal some findings, quote:

• Uncertainty over the future of many Long Covid and ME/CFS services

• Significant challenges around funding and continuity

• ME/CFS services being considered for integration with post-COVID services

• Anticipation of service disbandment by March 2025 without renewed funding

• Some services already scaled back or closed

The Current State of Long Covid and ME/CFS Services

The Data Architecture

The report indicates that the Long Covid data dashboard infrastructure is intact, but publication ceased in April 2024. There are no current resources allocated for analytical support. Notably, reactivating the service would require only two wte (whole time equivalent) data analysts and no additional cost—so this is not a financial issue.

The option to reopen this service is shown in Annex 4 – Options Appraisal: Data Improvement, but there are currently no plans to pursue it. This lack of action further entrenches the invisibility and lack of accountability for Long Covid and ME/CFS services.

There is no resourced analytical support for the Long Covid data collection and no plans to update or enhance its development, so quality and visibility will remain inadequate in terms of access and future improvements.

Key points include:

• No national dataset exists for ME/CFS services.

• Post-COVID Assessment service data is still being submitted, contributing to a registry—but with a 50% reduction in return rates, limiting its usefulness.

The Data

Even the limited data provided does not offer insights into service quality, satisfaction, or clinical outcomes. Six questions were asked in the stocktake:

1. What current Long Covid services does each ICB offer?

2. If none, where are patients referred?

3. Who provides these services?

4. What funding is allocated per service?

5. How many people are referred?

6. What types of clinicians deliver the services?

Yet again, the poor response rate prevents a coherent national picture. It is staggering that such fundamental data isn't readily available in this digital age. How can services be effectively coordinated without comprehensive data? Where is the oversight - and therefore, accountability?

Annex 1 outlines key takeaways. One striking point is the high prevalence of Long Covid—averaging 4.32%. While this is lower than some estimates, it still represents a significant number of people affected. A small percentage of a large number is a large number.

For instance, in London, a 4.5% prevalence equates to around 40,500 people—yet only 75 referrals were made in December 2024.

The ME/CFS picture is even worse: prevalence data is outdated (from a 2011 study) and lacks adjustments for the impact of COVID-19. London’s estimated rate of 0.19% would mean 1,710 people affected—yet there is no data on referrals.

The Considerations

There is some hope. Section 3 of the report suggests that the #FundThePlan campaign by There For ME may be having an impact:

Consideration needs to be given to the lack of allocated funding for the ME/CFS Delivery Plan, increasing the risk to its implementation.

There is also a glimmer of hope that evidence-based medicine may play a role in future recommendations. However, the quality of evidence used to justify past ME treatments has been highly questionable—so this requires close scrutiny.

One major factor: NHS England is due to be disbanded. Structural upheaval could result in key projects and momentum being lost. Transparency is essential to hold bodies accountable during such changes.

Collaboration is required between NHS England and the DHSC to develop actionable and evidence-based recommendations aligned with responsibilities.

The Recommendations

So what does NHS England actually recommend? Annex 4 lays out five options.

Only one of these options includes a focus on ME/CFS. It's unclear how the ME Delivery Plan was developed with so little supporting data—and why this stocktake wasn’t conducted earlier?

The Conclusions

Rather than providing clarity, the stocktake raises more questions than answers. In the best-case scenario—if Long Covid and ME/CFS are prioritised—we might see:

• Data processing and publication – potentially starting in April 2025.

• Regional assurance mechanisms – also due to begin in April 2025.

• Post-viral reform and commissioning plans – intended to address the lack of focus on ME/CFS.

Sir Stephen Powis initiated a Post-Viral Long-Term Conditions Task and Finish Group in December 2024. This group will provide guidance to the DHSC ME/CFS Task and Finish Group, which is responsible for the ME/CFS Delivery Plan expected in summer 2025.

The Concerns

At LCA, we remain cautious due to the lack of available data. We have three primary concerns:

1. Whether Long Covid and ME/CFS will be prioritised. The death of Maeve Boothby O’Neill, who starved at home due to a lack of commissioned severe ME services, underscores the urgency that should be obvious.

2. The nature of reform. Reform is vital but who will be involved, and what agendas will they bring? Will an informed patient voice be able to participate?

It is looking highly plausible that Long Covid Clinics will be integrated into fatigue and complex care clinics. The era of nationwide specialist clinics might be over. We can see that this has been the plan for years, evident in Feltz-Cornelis et al 2024, based on the dephi survey that nearly broke Twitter because it was so bad.

The question isn’t so much are Long Covid Clinics going to stay open, it is the reform the post-acute viral ecosystem needs and the embedded elite capture that has already happened by those invested in a CBM, BPS and rehab model.

We know the system is broken. We can see this from the surveys of appalling poor care received in both Long Covid and ME/CFS; community testimony and that there is no commissioned care for severe and very severe ME/CFS and Long Covid. Getting a larger, more embedded version of this flawed state of affairs as reform is going to exacerbate and not solve the deep systemic problems.

It is clear that profound, courageous and paradigm-shifting reform is needed. To do this we need transparency to the data, reports and processes; involvement of the informed patient community and a clear view of the critical situation from those in power. How many more patients have to die and suffer inhumane neglect for this to happen?