Thank you for your correspondence of 21 November on behalf of your constituent xxxx about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I apologize for the delay in replying.
I am also sorry that xxxx has not received an update on the consultation report which was delayed, partly due to last year’s general election and the change of Government.
My deepest sympathies go out to Maeve Boothby O’Neill’s family and friends. Maeve and her family were forced to battle the disease as well as a healthcare system that repeatedly misunderstood and dismissed her.
As xxxx is aware the Department received a prevention of future deaths (PFD) report in relation to Maeve’s death. We have responded to the PFD, addressing the concerns raised by the coroner. It is important that we learn the lessons from every PFD report.
We want a society where everyone, including those with long-term conditions such as long COVID and ME/CFS, receives high-quality, compassionate care that also supports their families and carers. We will change the NHS so that it becomes not just a ‘sickness service’, but able to prevent ill health in the first place. This will help us to be better prepared for the change in the nature of disease and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.
People with ME/CFS deserve the most appropriate treatment and to be confident that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS.
As xxxx is also aware, the Department published the ME/CFS interim delivery plan in August 2023, alongside a public consultant that closed in October 2023. Following my appointment after the General Election, one of my key priorities was to ask officials for an update on this consultation. They informed me that the consultation had received over 3,300 responses and there were a particularly large number of qualitative questions, which meant the process of analysing the responses took longer than expected. However, on becoming the lead minister for long-term conditions, I made it a priority that this work should be sped up. A summary of responses was published on 19 December 2024.
We have reconvened the ME/CFS Task and Finish Group, which includes senior officials from the Department and across Government, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved governments and ME/CFS charities and organisations. The consultation responses, alongside continued stakeholder engagement via the ME/CFS Task and Finish Group, will inform the development of the final delivery plan for ME/CFS, which we aim to publish by the end of March. The plan will focus on improving research, attitudes and education, and bettering the lives of people with this disease.
I hope this reply demonstrates our commitment to improving care and support for people living with ME/CFS.
