Government Response

The Government responded to this petition on Thursday 17th February 2022

Since 2018 the Government has committed over £53m to research on ME and Long COVID. Robust research and scientific evidence is pivotal in improving our understanding and treatment of both conditions.

COVID-19 is a new disease and therefore it is not yet clear what the physical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus, referred to as “post-COVID-19 syndrome” or “Long COVID”. Myalgic Encephalomyeltis (ME) is a complex medical condition affecting multiple body systems and its pathophysiology is still being investigated.

The funding of robust research and scientific evidence is recognised as playing a pivotal role in shaping how we improve our understanding and treatment of both conditions.

Over the past 12-18 months the Government has invested over £50 million through the National Institute for Health Research (NIHR) and UK Research Institute (UKRI) in Long COVID research projects to improve our understanding of the diagnosis and underlying mechanisms of the disease, the effectiveness of pharmacological and non-pharmacological therapies and interventions as well as evaluating clinical care.

In 2020 NIHR and the UKRI Medical Research Council (MRC) came together to fund the world’s largest genome-wide association study (GWAS) of ME/CFS called ‘DecodeME’ (https://www.decodeme.org.uk/). This £3.2m study will analyse saliva samples from 25,000 people with ME/CFS (including people with Long COVID who meet the inclusion criteria) and to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

Through a cross-board highlight notice on ME/CFS, the MRC is trying to encourage applications with a focus on the underpinning mechanisms of ME/CFS. Priority areas include immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS and mechanisms of ME/CFS in children (https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/).

Where the outward symptoms for both conditions appear the same, studies looking at the underlying physiological mechanisms of either may provide additional benefit by allowing read across between the two conditions. For example, if signs of vascular dysfunction, such as microclots and platelet hyperactivation, were picked as part of the ongoing research into the physiological mechanisms of Long COVID this could also inform the understanding and treatment for people affected by ME.

The NIHR and MRC continues to welcome funding applications for research into any aspect of human health, including ME/CFS and Long COVID. However, it is not usual practice to ring-fence funds for particular topics or conditions. Applications are 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.

Department of Health and Social Care