“This interim plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim plan is a significant step forward in delivering that vision.”
DHSC Interim Delivery Plan on ME/CFS: Helen Whately, Minister of State for Social Care.
“We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely. To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views.“
Will Quince, Minister of State for Health.
ME Association Comment
The ME Association welcomes publication of the DHSC Interim Delivery Plan with its emphasis on:
- stimulating biomedical research,
- including education on ME/CFS for all health profesionals, and
- making improvements to the care and management of adults, children and young people with ME/CFS that are based on recommendations in the 2021 NICE Guideline.
We would like to thank everyone who has been involved in producing this interim plan and Sajid Javid MP for initiating it.
The 8-week consultation process acknowledges that there is still work to be done and this should include:
- recognising how the symptom and pathological overlaps with Long Covid can be used in research to the benefit of both groups of people.
- strengthening the section on severe and very severe ME.
- shortening the timeframe for completion for some of the key actions.
We look forward to shortly having a document that will help to improve the lives of everyone with ME/CFS – wherever they live in the UK.
We will produce a more detailed response during the period of consultation.
More information
- DHSC: Improving the experiences of people with ME/CFS: interim delivery plan | 09 August 2023
- The Times: NHS told to stop blaming ME patients for being ill and improve care | 09 August 2023
- Gov.UK: Government announces new plan to help those impacted by ME/CFS | 10 August 2023
- Times Educational Supplement Magazine: New guidance on supporting pupils with ME and CFS | 10 August 2023
- PULSE: GPs to be given training on ME/CFS to counter ‘dismissive attitudes’ | 10 August 2023
- Podcast: The Week Unwrapped (16:40): #340 A new human, ME and date stacking | 11 August 2023
- The Times: Sajid Javid promises radical action for patients debilitated by ME | 13 May 2022
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
The Department of Health and Social Care Interim Delivery Plan on ME/CFS
Ministerial foreword
“I am delighted to publish this interim cross-government delivery plan on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), which has been developed in close partnership with people with ME/CFS, carers, professionals, charitable bodies and other significant organisations. I would like to thank everyone involved to date for their time and enthusiasm for this work.
“We have used a co-production approach to respect the core principles that we outlined at the start of this journey on World ME Day, 12 May 2022; firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, that we must trust and listen to those with personal experience of ME/CFS.
“I know that ME/CFS affects the lives of many children and adults across the country; it can be an incredibly disabling condition that makes it difficult for people to take part in everyday activities, enjoy a family or social life, access services and engage in work or education – especially for the estimated 25% of people who have severe or very severe symptoms.
“This interim plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim plan is a significant step forward in delivering that vision.
“For the time being, the interim plan covers the population of England. However, to help inform the final scope of the plan, the Scottish Government is keen to understand the views of stakeholders in Scotland on aspects where there might be the potential to consider any common approaches or relevant actions within a Scottish context. The Welsh Government and Northern Ireland Executive are also keen to review the views of their residents on the interim plan so that they can consider the implications for local policy.
“I commend this interim plan to you and invite you to submit comments using our survey if you are a resident of the UK aged 13 or over. The final delivery plan will be published later this year, taking the comments received into account.”
Helen Whately, Minister of State for Social Care