The Government’s delivery plan on ME/CFS is aiming to boost research, improve attitudes and education, and enhance the lives of people living with ME/CFS.
We fully support the strengths of the plan which mark an important shift in acknowledging that ME/CFS is a serious and often long-term disabling condition, along with a commitment to several low- or no-cost initiatives to improve awareness, education and research. In particular:
- Three e-learning modules and various other actions to improve education and training of all health and social care professionals.
- Updating of Department of Education guidance on the education of children
- Increasing awareness among people with ME/CFS and carers of the support that is available for social care and how to access it
- The development of repurposed pharmaceutical interventions for ME/CFS and other post viral disease
Whilst today’s announcement is an important step forward, there are several key areas where the plan has failed to deliver:
- There is no clear ambition or strategy to drive consistent implementation of the NICE guideline recommendations across Integrated Care Boards (ICBs), leading to a postcode lottery in diagnosis and access to specialist care.
- While the final version of the plan does now include some research funding, we need a far more ambitious long term research strategy linked to dedicated funding, that mirrors the way in which research into neglected conditions like dementia have been transformed by strategies such as the Dementias Platform. Otherwise, the majority of biomedical ME/CFS research studies and infrastructure, including the ME Biobank, will continue to be funded by the charity sector.
- Severe and very severe ME receives minimal attention, despite known risks during hospital admissions and the issues raised in the recent Prevention of Future Deaths report from the Coroner in the Maeve Boothby O’Neill case.
- The Plan’s Living with ME section focuses heavily on return-to-work pathways, but does not address the fear and distress caused by welfare reforms, particularly looming changes to PIP eligibility.
- Some of the NHS website information on ME/CFS update remains out of line with NICE guidance, continuing to reference “extreme tiredness” and listing CBT as a core treatment.
- While the Plan references Long Covid in research, it ignores the reality that NHS England has withdrawn funding from many Long Covid clinics, which are now closed or in the process of being merged with ME/CFS services—reducing overall access to care.
- Several of the Plan’s own deadlines have already passed, and it is unclear what progress has been made.
The ME Association will continue to monitor the plan closely and remain actively engaged with colleagues in the Government’s Department of Health and Social Care (DHSC), and we thank the DHSC team for their commitment and dedication. We look forward to working constructively with the Government to push the plan forward as a priority and ensure that these actions support people living with ME/CFS.
The ME Association will be posting a more in-depth response in due course.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
