The Government is investing over £1.7 billion a year in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). Since 2011, the MRC has funded seven research projects totalling £2.62 million, following a call for proposals to help increase the understanding of the mechanisms of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME research remains an area of high strategic importance for the MRC. Applications are encouraged in response to MRC’s Science Boards and Panels under a Cross-Board highlight notice, in place since 2003 and updated in 2011.
On 20 September 2017, the National Institute for Health and Care Excellence (NICE) announced its decision to undertake a full update of the guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:
In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the NHS and is a key part of GPs’ qualifying exams.
Finally, regarding concerns about the wellbeing of children; we recognise that chronic medical conditions, such as ME, can put a strain on the child and their family. Whilst the Department for Education would want to avoid action that would add to the strain, it is right that children’s services should be prepared to assess the needs of children who may be at risk. It is important that the assessment of a child is conducted on a multi-agency basis, and takes account of any medical condition the child may have.
In July 2018, the Department for Education published an updated version of its statutory safeguarding guidance, ‘Working Together to Safeguard Children’. This includes guidance on how assessments should be conducted, and sets out new local multi-agency procedures. Health services are one of the core local safeguarding partners.