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Secretary of State for Health and Social Care’s statement on ME/CFS

On International ME Awareness Day 2022, Lord Kamall, Parliamentary Under Secretary of State (Minister for Technology, Innovation and Life Sciences) issued the following important statement on behalf of the UK Secretary of State for Health and Social Care which has the potential to improve greatly the perception of ME/CFS and the quality of treatment offered to those affected by the disease.

My Rt Hon Friend the Secretary of State for Health and Social Care (Sajid Javid) has made the following written statement:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult 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. Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.

Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families.

Firstly, I am pleased to welcome today the publication of the top ten (plus) research priorities for ME/CFS, published by Action for ME and agreed by the James Lind Alliance Priority Setting Partnership on ME. This partnership included people with lived experience and clinicians working together to reach a consensus. I want to thank Action for ME and everyone who took part in this important work, recognising that for many this would have taken considerable effort.

To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next. The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area. Funding for high-quality research into ME is available through existing commitments of HM Government to research and development. The National Institute for Health and Care Research (NIHR) will work with the research community to respond to the priorities as set out in the Priority Setting Partnership, alongside other funding partners.

Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. In particular, we are engaging with the Scottish Government to explore areas of potential shared interest and learning, especially in terms of research into ME/CFS.

This will build on the recommendations of the Priority Setting Partnership, the recently updated guideline for ME/CFS from the National Institute for Health and Care Excellence, and the comprehensive work of the All-Party Parliamentary Group on Myalgic Encephalomyelitis to date.

At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.

Following this announcement, officials will work with stakeholders ahead of publishing the delivery plan later this year.

In summary, the statement commits the Department as follows –

  • The Secretary of State, will co-chair a roundtable with the Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next re research
  • The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field.
  • The Government confirms it is committed to funding research into ME/CFS.
  • The National Institute for Health and Care Research (NIHR) will work with the research community to respond to the priorities as set out in the Priority Setting Partnership, alongside other funding partners.
  • The Government’s intention is to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. In particular, it will engage with the Scottish Government to explore areas of potential shared interest and learning, especially in terms of research into ME/CFS.
  • At the heart of the delivery plan will be two core principles. Firstly, that thenot enough is know enough about ME/CFS, which must change if experiences and outcomes are to be improved. Secondly, we must trust and listen to those with lived experience of ME/CFS.

Officials will work with stakeholders ahead of publishing the delivery plan later this year.

The official statement is available in Hansard 12 May 2022 (25WS) and was also commented on in ‘The Times’ (paywall).

As a foremost funder of research into ME/CFS, ME Research UK stands ready to work with the government and other stakeholders to turn words into action.