In responding to the government’s consultation on the terms of the draft Delivery Plan, ME Research UK pointed out that not only was there no commitment to ring-fence dedicated funding for ME/CFS research, to reflect the disease’s prevalence and severity, but that research also indicates that people with ME/CFS experience higher levels of functional impairment and lower levels of wellbeing, compared with conditions including depression, cancer and rheumatoid arthritis (RA) which was (and is) not reflected in research investment. This has been highlighted by the charity over a number of years.
Tom Morrison MP in a written question (UIN 13300) asked the responsible Minister about disease burden and research spend when he queried “… what assessment he has made of whether current strategic prioritisation for ME research is proportionate to the disease burden.”
The answer, and that to a question on a similar vein by James Naish MP, was
The Department has not made a specific assessment of whether the strategic prioritisation for research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is proportionate to the disease burden. However, we recognise that this has been an under researched area and the Government is committed to funding high-quality research to understand the causes, consequences, and treatment of ME/CFS.
The Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), which is part of UK Research and Innovation. The NIHR and the MRC are working together to deliver the actions on research in the ME/CFS Final Delivery Plan. Two projects have recently received funding to investigate the feasibility of a new clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including Long Covid and ME/CFS. In addition, £4.75 million of Government funding has been provided to SequenceME, which will create the first high-resolution genetic map of the condition, paving the way to future diagnostics and treatments.
In responding to Mr Naish’s query the government went into a little more detail –
- £4.75 million of Government funding has been provided to SequenceME, which will create the first high-resolution genetic map of the condition, paving the way to future diagnostics and treatments.
- To support research capacity building, the MRC has provided £845,000 to researchers at the University of Edinburgh towards PRIME, a new partnership award that aims to build infrastructure to enable ME/CFS biomedical research, and
- support is available to researchers to develop competitive funding applications from the NIHR’s Research Support Service.
ME Research UK is of the opinion that as welcome as the support for these initiatives is, the government’ has chosen to ignore calls for appropriate funding for the disease in terms of both prevalence and severity and nor do the initiatives reflect the bold ambition seen in other countries – notable the Netherlands and Germany.
More Info – PRIME – £845,000 to Edinburgh University with 3 aims
- create at least 15 new research collaborations to coordinate and engage researchers.
- strengthen international research networks by forming two global groups of research organisations, one focusing on genetics and the other on molecular biomarkers.
- fund a national charity to build a trained Patient and Public Involvement (PPI) pool of at least 100 people who have lived experience of ME.
