Building an NHS that’s there for Long Covid and ME (July 2024)

Summary

The Covid-19 pandemic continues to have a big impact on the NHS and society. Among those most heavily affected are up to two million adults and children affected by Long Covid. Over 1.5 million people report their daily activities being limited by Long Covid and a significant proportion of Long Covid patients meet the diagnostic criteria for myalgic encephalomyelitis (ME) sometimes referred to as Chronic Fatigue Syndrome (CFS). Patients with ME have faced decades of inadequate care and insufficient funding for biomedical research, which have shaped the NHS care available to Long Covid patients.

This report was written by Karen Hargrave and Emma Gore-Lloyd, founders of ThereForME, a campaign calling for an NHS that works for people with Long Covid and ME. The report outlines the results of a survey of over 300 people living with Long Covid and ME which aimed to evaluate parts of the new Government's mission plan for the NHS against their experiences. The survey focused on the following three Labour commitments that could have the biggest impact, where people with Long Covid and ME highlight current shortcomings:

1. An NHS that is there when people need it
2. Change so that more people get care at home in their community
3. The promise to introduce a revolution in technology

Read the full report

Read the executive summary

Find out more about the ThereForME campaign

Content

The report makes the following recommendations:

1. Commit to an NHS that is there for people with Long Covid and ME

• Articulate a vision for an NHS where Long Covid and ME patients are listened to, believed and where they can access safe care, building on the best that modern science can offer.
• Prioritise the urgent publication of the cross-government delivery plan for ME/CFS, ensuring it meets these priorities.
• Appoint a Minister for Long Covid and ME to signal that improving patients’ care is a priority for a Labour government.
• Develop an NHS Severe ME Safe Hospitals protocol to ensure the safety of patients accessing hospital care for life-threatening symptoms.

2. Make the most of the UK’s science and technological expertise to advance treatments for Long Covid and ME

Commit to at least £100 million of annual research funding for Long Covid and ME. This should prioritise biomedical research, developing biomarkers and trialling treatments, led by patients’ lived experience and priorities.

• Convene UK-based researchers, clinicians, the private sector and patient advocates to develop a strategy for accelerating treatments.
• Ensure that emerging research filters down into clinical practice in the NHS. For example, by committing to update the 2021 NICE Guidelines for Long Covid based on new research.

3. Do more with the tools we already have

• Commit to and take accountability for implementing the 2021 NICE Guidelines for ME/CFS. The guidelines should be applied to all patients with an ME/CFS diagnosis (including those with Long Covid).
• Support access to emerging treatments within the NHS, including as part of clinical trials.
• Leverage technology-enabled solutions in the NHS to better support patients to manage their symptoms at home e.g. using wearables for remote monitoring and symptom management.
• Mobilise tools to measure and reduce the ongoing health burden of Long Covid in the UK. For example, by supporting the wider roll-out of air filtration systems within key public services (e.g. healthcare settings and schools).