Sarah Lewis

Parliamentary Under-Secretary of State for Public Health and Prevention  

39 Victoria Street London  
SW1H 0EU  

HM Coroner Debbie Rookes  
Coroner’s Office  
37 Old Weston Road  
Bristol  
BS48 1UL  

Dear Ms Rookes,   

2nd September 2025  

Thank you for the Regulation 28 report of 7 July 2025 sent to the Secretary of State for 
Health and Social Care about the death of Sarah Lewis. I am replying as the Minister with 
responsibility for long-term conditions, including myalgic encephalomyelitis / chronic 
fatigue syndrome (ME/CFS).   

Firstly, I would like to say how saddened I was to read of the circumstances of Sarah’s 
death, and I offer my sincere condolences to their family and loved ones. The 
circumstances your report describes are concerning and I am grateful to you for bringing 
these matters to my attention.   

The report raises concerns over:   

1.  the provision of ME services across the country being inconsistent;   
2.  the diagnosis and validation of severe symptoms including outdated beliefs on ME;   
3.  the lack of research into ME including lack of funding;   
4.  other professionals misunderstanding ME, which causes barriers for patients trying 

to access support;   

5.  NICE guidance not being fully considered and implemented.  

In preparing this response, my officials have made enquiries with NHS England to ensure 
we adequately address your concerns.  

I understand that the National Institute for Health and Care Excellence (NICE) will be 
replying separately. I would like to reassure you that whilst NICE guidelines are not 
mandatory, the Government does expect healthcare commissioners to take the guidelines 
fully into account in designing services to meet the needs of their local population and to 
work towards their implementation over time. NICE has also recently published a Clinical 
Knowledge Summary on ME/CFS, available at the following link: Myalgic 
encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Health topics A to Z | CKS | NICE. 

  
  
  
  
  
  
  
  
  
  
   
   
   
   
 While Clinical Knowledge Summaries are not equivalent to NICE guidance, we understand 
that they are well used, particularly in primary care.     

The Department of Health and Social Care (DHSC) published the ME/CFS Final Delivery 
Plan on 22 July, which can be found here:  
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan. The plan 
focuses on boosting research, improving attitudes and education, and bettering the lives of 
people with this debilitating disease. We have worked closely with ME/CFS patients, 
carers, clinicians, charities, research funders and researchers throughout the development 
of the interim and final delivery plans. This engagement has enabled us to develop new 
and more ambitious actions that deliver meaningful change for the ME/CFS community.  

NHS England remains committed to collaborating with DHSC on the implementation of the 
ME/CFS Final Delivery Plan, with a view to supporting integrated care boards to ensure 
equitable access and evidence-based care, including implementation of the 2021 NICE 
guidance on ME/CFS. This partnership will support the integration of best practices and 
insights to enhance service quality and consistency across the system. More specifically, 
within the ME/CFS Final Delivery Plan, NHS England will co-design resources for systems 
to improve services for mild and moderate ME/CFS. Additionally, DHSC, with NHS 
England, will explore whether a specialised service should be prescribed by the Secretary 
of State for Health for very severe ME/CFS.    

Education and training  

In relation to the issue of some people still perceiving ME/CFS as not being real and 
healthcare and other professionals misunderstanding ME/CFS, the Department has been  
working closely with NHS England to develop an e-learning course on ME/CFS for 
healthcare and other professionals, with the aim of supporting staff to be able to provide 
better care and improve patient outcomes. NHS England’s e-learning package comprises 
three sessions.   

In May 2024, NHS England published the first session, with universal access, providing an 
overview of the condition, and aiming to increase awareness and reduce stigma around 
ME/CFS.  The second session, published in January 2025, again with universal access, 
aims to inform and empower community-based healthcare practitioners with the 
knowledge and tools needed to effectively diagnose, manage and support patients with 
ME/CFS. The third session, aimed specifically at clinicians, is being finalised and is due to 
be published shortly. It focuses on severe ME/CFS and management in secondary care 
and, alongside the first and second sessions, will form a comprehensive package for NHS 
staff to be able to provide better care for patients with ME/CFS.    

Whilst the training is not mandatory, there is a range of actions in the ME/CFS Final 
Delivery Plan aimed at increasing the uptake of NHS England e-learning sessions, to both 
improve professionals’ and the public knowledge of ME/CFS, and to create greater 
awareness and visibility of the condition across professions.    

The Royal College of General Practitioners, the Chartered Society for Physiotherapists 
and the Royal College of Occupational Therapists agreed to share and promote NHS 
England’s e-learning modules. The Royal College of Physicians (RCP) will also rely on 

  
  
  
  
  
  
   
 NHS England’s e-learning modules, which the RCP considers to be suitable, for their 
members, all of whom the RCP is wants to undertake the e-learning by the end of 2025.  
The Medical Schools Council has shared NHS England's e-learning package on ME/CFS 
with all UK medical schools, encouraging them to provide undergraduates with direct 
patient experience. NICE has also added the e-learning to its tools and resources page, 
with further modules to be added as they become available.  

The Department for Education will also encourage special educational needs and disability 
(SEND) and medical condition organisations to signpost the NHS England e-learning on 
ME/CFS on their websites, and will signpost it to providers.   

DHSC will continue to reach out to its networks, including the Royal College of Nursing, to 
promote the e-learning, and will issue targeted communications regarding the e-learning 
via wider sector networks, such as the Health and Wellbeing Boards, adult social care 
provider networks, and representative bodies and charities.   

Research   

DHSC funds research on health and social care through the National Institute for Health 
and Care Research (NIHR). The NIHR and Medical Research Council (MRC, part of UK 
Research and Innovation) remain committed to funding high-quality research to 
understand the causes, consequences, and treatment of ME/CFS.     

The NIHR welcomes funding applications for research into any aspect of human health, 
including ME/CFS. These applications are subject to peer review and judged in open 
competition, with awards being made on the basis of the importance of the topic to patients 
and health and care services, value for money and scientific quality. In all areas, the 
amount of NIHR funding depends on the volume and quality of scientific activity.   

The Government is aware of the devastating effect ME/CFS can have on those suffering 
from the condition and recognises that it is an under-researched area. As mentioned 
above, the level of research funding awarded is directly related to the number and quality 
of research applications received and, unfortunately, despite our efforts to stimulate 
highquality research in this area, we have historically received a small number of 
applications for funding in this area. Between the 2019/20 and 2023/24 financial years, the 
UK Government, through NIHR and MRC committed around £6.5 million in research into 
ME/CFS. This includes £3.2 million towards the DecodeME study into the genetic 
underpinning of ME/CFS. This study will help increase our understanding of the condition 
and therefore contribute to the future development of diagnostic tests and targeted 
treatments for ME/CFS.   

Together with the MRC, we are actively exploring next steps for research in ME/CFS. In 
the ME/CFS Final Delivery Plan, we have outlined the research actions and additional 
support that we will offer to the research community to increase the volume and quality of 
applications. This includes a new funding opportunity for a development award focussed 
on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes 
and associated conditions, including ME/CFS. This funding opportunity is a key component 
of our response to the need for further research-based evidence related to the diagnosis, 
management and treatment of post-acute infection conditions, including ME/CFS. We are 

  
  
   
  
   
    
   
 also planning an NIHR and MRC hosted showcase event for post-acute infection 
conditions (including ME/CFS and long COVID) research later this year to stimulate further 
research in this field.    

I hope that this provides reassurance that we take seriously the challenge of ME/CFS and 
are committed to ensuring that those living with it have the opportunity to participate in, 
and benefit from, research, with the aim of better understanding the causes of ME/CFS, 
identifying new treatments and improving patient outcomes.  

Lastly, I understand the effect that having a long-term condition like ME/CFS can have on a 
person’s mental health and I note that Ms Lewis had a history of anxiety and depression. 
NHS Talking Therapies Long Term Conditions services provide evidence-based 
psychological therapies for people with depression and anxiety disorders, who also have a 
long-term physical health condition, such as ME/CFS. All integrated care boards are 
expected to expand services locally by commissioning NHS Talking Therapies services 
integrated into physical healthcare pathways. In addition, anyone in England experiencing 
a mental health crisis can speak to a trained NHS professional at any time of the day by 
calling 111. Trained NHS staff will assess patients over the phone and guide callers with 
next steps.  

I hope this response is helpful. Thank you for bringing these concerns to my attention.    

Yours sincerely,

2nd floor
2 Redman Place
London
E20 1JQ
United Kingdom

8 August 2025

Ms Debbie Rookes
Assistant Coroner
Coroner's Court
Old Weston Road
Flax Bourton
BS48 1UL

Dear Ms Rookes,

Re: Regulation 28 Prevention of Future Deaths Report in respect of Sarah Jayne Lewis

I write in response to your regulation 28 report, dated 7 July 2025, regarding the very sad death
of Sarah Jayne Lewis. I would like to express my sincere condolences to Ms Lewis’s family.

We have reflected on the circumstances surrounding Ms Lewis’s death and senior clinical
advisers within our patient safety team have reviewed the concerns raised in your report.

Following discussions with colleagues at the Department of Health and Social Care (DHSC), we
understand they will respond fully to points 1 to 4. We make the following observations.

1.  Despite ME having received some more recent attention, the provision of ME

services around the country remains inconsistent. I understand that there are still
areas where there is no provision. The evidence revealed that a very important first
stage for ME sufferers is that they receive a diagnosis and validation for their
severe symptoms. Without provision of a service, there remains a risk that this will
not occur. I was told that there is still a belief by some that ME is not real and this
has a profoundly negative effect on sufferers and their ability to seek support.

The provision and implementation of ME/CFS services is a matter for NHS England
(NHSE) and Integrated Care Boards (ICBs).

In the cross-government final delivery plan for ME/CFS published on 22 July 2025, it was
noted that NHS England has completed a stocktake of existing ME/CFS services.
Following this, NHSE will publish a template service specification for mild and
moderate ME/CFS which will be disseminated to all ICBs to inform their commissioning
decisions and support quality of local service provision to match local needs.

nice.org.uk | nice@nice.org.uk

 The delivery plan also states that the DHSC, with NHS England, will explore whether a
specialised service should be prescribed by the Secretary of State for very
severe ME/CFS.

Our guideline on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue
syndrome: diagnosis and management [NG206] makes recommendations on the
assessment and skills required for such a specialist service and NICE staff supported the
development of the delivery plan.

2.  Historically, there has been little research into ME. As a result of this, nobody

knows what causes it, and there is therefore no cure. Whilst I note there has been
a small investment recently in research, I was told that this is not enough, and that
a perception remains about ME not being real. The resultant effect is that some ME
sufferers have no hope that their symptoms will ever improve.

When developing our guideline on ME/CFS [NG206] the independent guideline
committee reviewed the relevant literature.

They made a number of recommendations for research. As we develop guidance, we
identify gaps and uncertainties in the evidence base which could benefit from further
research. The most important unanswered questions are developed into research
recommendations.

The commissioning and funding of such research is not within NICE’s remit. Funding is
available from the National Institute for Health and Care Research (NIHR) for projects
addressing NICE research recommendations. We encourage researchers to apply for
funding to generate new evidence to inform future NICE guidance.

3.  Other professionals do not understand ME, what it is or the symptoms it causes.

This can be a barrier to those with ME receiving support, or accessing
care/treatment they need. A hospital passport is now being utilised at North
Bristol, which assists sufferers. However, it is not clear that this is being used in
all areas, and there remains a lack of understanding about ME. Education and
training about this has not been prioritised.

Education and training is the remit of the professional colleges and the NHS. NICE has
supported the development of e-learning materials consistent with NICE guidance on
ME/CFS which we make available on our website as they are published.

NICE has also commissioned a Clinical Knowledge Summary (CKS) topic on ME/CFS,
developed by Clarity Informatics Ltd, which was published in May 2025. CKS topics are a
source of advice and information primarily for health professionals working in primary
care, but they do not constitute formal NICE guidance.

4.  NICE issued update guidance relatively recently but it is not clear whether this has

been fully considered or implemented by commissioning bodies around the
country.

As mentioned above, service commissioning and delivery is the responsibility of the
relevant NHS body.

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 I hope this response is helpful.  Please do let me know if you require any further information and
again, I offer my sincerest condolences to Ms Lewis’s family.

Yours sincerely,

Chief Executive

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