In a flurry of written questions on ME/CFS, one by Gregory Stafford MP answered by Dr Zubir Ahmed MP Parliamentary Under-Secretary (Department of Health and Social Care), inquired about a national ME/CFS research strategy which although trailling ambition and a determination to accelerate progress, progresses matters not one iota.
Q – To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the current strategic approach to ME/CFS research; and whether his Department plans to develop a coordinated national research strategy for the condition.
A – We have outlined our strategy to support myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research in the ME/CFS Final Delivery Plan published in July. These steps include a research showcase event, a new funding opportunity for a development award focused on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services, and research infrastructure and capacity-building.We are determined to accelerate progress in the treatment and management of ME/CFS and will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Separately, when asked by Lee Anderson MP about “steps to improve the reliability of ME/CFS diagnosis tests” the Parliamentary Under-Secretary (Department of Health and Social Care) elaborated that
The National Institute for Health and Care Research (NIHR) and Medical Research Council have provided over £3.2 million towards the DecodeME study which aims to understand if there is a genetic component to the condition. While there is currently no diagnostic test for ME/CFS, we hope that DecodeME will help support the development of diagnostic tests and targeted treatments. Preliminary findings from DecodeME indicate genetic differences in eight areas linked to the immune and nervous systems in people with ME/CFS. This discovery of specific genetic signals may help us understand the biological pathways involved in ME/CFS in the future. Further research is needed for the development of diagnostic tests and targeted treatments.
When Mr Anderson asked about increasing awareness of ME/CFS symptoms, a further Parliamentary Under-Secretary (Department of Health and Social Care), Ashley Dalton MP outlined student and GP educational initiatives
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the FDP, the Department of Health and Social Care (DHSC) has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All three sessions, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288(opens in a new tab)
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
As outlined in the FDP, we will improve awareness of ME/CFS by launching a public awareness initiative to promote wider awareness and understanding of the condition and support available to people with ME/CFS and their families.
DHSC will also engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families, as well as best practice in relation to safeguarding responsibilities. This will be taken forward in parallel with NHS England’s actions on ME/CFS services and neighbourhood multidisciplinary teams for children and young people.
Furthermore, as outlined in the FDP, the Department for Education is encouraging the sharing of ME/CFS-specific information with relevant organisations and promoting relevant training and resources to support children and young people.
