Government Response

The Government responded to this petition on Wednesday 14th June 2023

The Government is committed to funding high-quality research to improve treatment of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long Covid.

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 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.

Since 2020, 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 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) and to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

Government research funding is also provided by UK Research and Innovation and the Medical Research Council (MRC). Research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an area of strategic importance for the MRC and the only medical condition for which MRC has a dedicated Highlight Notice which identifies areas where proposals are particularly encouraged. These include proposals which have a focus on the underpinning mechanisms of ME/CFS. We would particularly welcome proposals that address one or more of the research areas identified by the ME/CFS Priority Setting Partnership.

The NIHR and MRC continue to welcome funding applications for research into any aspect of human health, including ME/CFS and Long Covid; 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.

The Department of Health and Social Care’s Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with a range of stakeholders, including research funders, to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field.

Department for Health and Social Care