PARLIAMENTARY WRITTEN QUESTION
Long Covid and Chronic Fatigue Syndrome (11 November 2024)

Since 2020, the National Health Service in England has invested significantly in supporting people with long COVID. This includes setting up specialist post-COVID services nationwide for adults, and children and young people, as well as investing in ensuring general practice teams are equipped to support people affected by the condition.

As of 1 April 2024, there are more than 90 adult post-COVID services across England, along with an additional ten children and young people’s hubs. These services assess people with long COVID and direct them into care pathways which provide appropriate support and treatment. General practitioners will assess patients that have COVID-19 symptoms lasting longer than four weeks and refer them into a long COVID service where appropriate. Referral should be via a single point of access, which is managed by clinician-led triage.

Over the last five years, the Government, through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), has invested over £57 million in long COVID research, with almost £40 million of this through two specific research calls on long COVID. The NIHR specifically has invested £42.7 million towards research funding for long COVID. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care. Further information on the research into long COVID commissioned through the NIHR is available at the following link:

https://www.nihr.ac.uk/about-us/what-we-do/covid-19/long-COVID

It is a priority for the Department to publish the final myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) delivery plan, and it is our intention to publish a consultation response summary later this autumn. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research and living with ME. We aim to publish in the winter of 2024/25.

The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study are available at the following link:

www.decodeme.org.uk