Urgent funding for research into Long Covid and ME/CFS treatments and cures

Around a quarter of a million people are suffering with ME/CFS in the UK and over 2 million with long Covid. Many of these people are severely disabled. There are no cures of specific medicines for these conditions. Urgent funding is needed for research to find effective treatments and cures.

It is quite frankly a disgrace that so little funding has gone into ME/CFS in the past few decades. The new pandemic is long Covid and we believe sufferers are not receiving enough help due to lack of research into treatments and cures. We need urgent funding for research into the pathology of these conditions. This should include research into mitochondria and the autonomic nervous system of patients with these conditions.

Millions of people are missing out on their lives. The Government must act now.

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.