An ME Association supporter reached out to his local MP, Andrew Percy, to encourage him to attend a meeting of the All-Party Parliamentary Group on ME. Unfortunately, Mr Percy couldn’t make the meeting, but kindly raised his constituent’s concerns with Helen Whatley, the Minister of State for Health and Social Care.
We thought you might like to read her response (permission to share has been obtained).
By email to: andrew.percy.mp@parliament.uk
4 April 2023
Dear Andrew,
Thank you for your correspondence of 13 March on behalf of your constituent about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Research
The Government funds research into ME/CFS through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) through UK Research Innovation. The NIHR and the MRC both welcome high-quality applications for research into all aspects of CFS/ME, including biomedical research. In total, the Government has funded £2.461million of research on ME/CFS in the last three financial years.
In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of CFS/ME. This £3.2million study, DecodeME, will analyse samples from 25,000 people with CFS/ME to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. It is hoped that the outcomes of this study will aid the development of diagnostic tests and targeted treatments.
Delivery Plan
On 12 May 2022, the then Secretary of State for Health and Social Care announced the Government’s intention to develop a cross-Government delivery plan for ME/CFS. In June, three working groups were established to support the development of the delivery plan: Research, Attitudes and Education, and Living with ME/CFS. Through these groups, we are engaging with stakeholders to consider available evidence and develop policy proposals.
The Research group is considering how to address the research priorities set by the James Lind Alliance Priority Setting Partnership, which will build on the existing funding for ME/CFS research. Consideration of improved education on ME/CFS for medical staff, including trainee GPs, is being developed by the Attitudes and Education group.
- Updates on the plan can be found here [MEA Note: We are expecting a new update soon.]
Medical Training
The General Medical Council (GMC) is introducing the Medical Licensing Assessment (MLA), a new way of assessing final-year medical students that will assure they meet a common and consistent threshold for safe practice before they are licensed to work. From the academic year 2024/25, all students graduating from UK medical schools will be required to pass the MLA as part of their degree.
CFS is included in the content map for the MLA, which sets out the core knowledge, skills and behaviours that are essential for safe practice and therefore may be tested in the final assessment, for example, diagnosis and management of conditions such as CFS, as well as risk management around it. Schools will lead and deliver the assessment, and the GMC will regulate it, for all students graduating from 2024/25. Once qualified, all doctors are responsible for ensuring their clinical knowledge remains up to date as part of their continuing professional development.
In October 2021, guidance developed by the National Institute for Health and Care Excellence was provided for health and social care professionals on the diagnosis and management of ME/CFS. Whilst guidelines are not mandatory, clinicians are expected to take them fully into account.
Yours,
Helen Whatley,
Minister of State for Health and Social Care.
