Maeve Boothby O’Neill

Parliamentary Under-Secretary of State for Public Health and Prevention 

39 Victoria Street 
London 
SW1H 0EU 

Our ref: 

Ms Deborah Archer 
HM Assistant Coroner 
Coroner area of The County of Devon, Plymouth and Torbay 
County Hall 
Topsham Road 
Exeter, EX2 4QD 

By email: 

Dear Ms Archer,  

2 December 2024 

Thank you for the Regulation 28 report of 7 October 2024 sent to the Secretary of State / 
the Department of Health and Social Care (DHSC) about the death of Maeve Boothby 
O’Neill. 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 Maeve’s 
death.  The circumstances your report describes are deeply concerning and I am grateful 
to you for bringing these matters to my attention. I met with Maeve’s mother Sarah last 
week to offer my sincere condolences to her and her family, and to discuss how we can 
improve care for people with ME/CFS and work together to try and ensure no other 
families lose a loved one in such tragic circumstances. 

The report raises concerns over:  

i. 

ii. 

iii. 

iv. 

no specialist hospitals or hospices, beds, wards or other health care provision in 
England for patients with severe ME/CFS;  
no current available funding for the research and development of treatment and 
further learning for understanding the causes of ME/CFS;  
extremely limited training for doctors on ME/CFS and how to treat it, especially 
in relation to severe ME/CFS;  
the 2021 National Institute for Health and Care Excellence (NICE) guidelines on 
ME/CFS not providing any detailed guidance at all on how severe ME/CFS 
should be managed at home or in the community and, in particular, whether or 
not there is any necessary adaption needed to the 2017 guidance, Nutrition 
support for adults: oral nutrition support, enteral tube feeding and parenteral 
nutrition.  

In preparing this response, DHSC officials have liaised with NHS England, NICE and the 
Medical Schools Council to ensure a comprehensive approach to fully addressing your 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
  
  
 concerns. Those organisations will be replying separately to you, focusing on the concerns 
that fall within their competence.  My response, therefore, will primarily focus on the 
matters of concern relating to the funding of research into the causes of ME/CFS and the 
development of treatments for ME/CFS, and training for doctors on ME/CFS.  

Research 

On the issue of funding for research and development of treatment and further learning for 
understanding the causes of ME/CFS, it is not accurate to say that there is no funding 
available. The Government is committed to funding high-quality research to understand 
the causes, consequences and treatment of ME/CFS, and is actively exploring next steps 
for research in this area. Government research funding is currently available for ME/CFS 
through the National Institute for Health and Care Research (NIHR) and UK Research and 
Innovation.  

DHSC funds ME/CFS research through the NIHR and welcomes funding applications for 
research into any aspect of human health, including ME/CFS. We do not usually “ring-
fence” funding for any specific condition as 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. Unfortunately, 
despite our efforts to stimulate high-quality research in this area, we have received a low 
number of research applications on ME/CFS.  We will, however, continue to work with the 
community, to identify new opportunities to increase research in this area.  

I can also reassure you that over the last five years, the DHSC, through NIHR, has 
invested over £3.6 million in research programme funding for ME/CFS. This includes over 
£1.5 million to the DecodeME study, co-funded with the Medical Research Council, into 
the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people 
with ME/CFS to search for genetic differences that may indicate underlying causes or an 
increased risk of developing the condition. This study aims to increase our understanding 
of the disease and therefore contribute to the research base on diagnostic tests and 
targeted treatments for ME/CFS.  

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. 

Training and education 

In relation to the issue of training for doctors on ME/CFS and how to treat it, especially in 
relation to severe ME/CFS, the Department is working with NHS England to develop an e-
learning course on ME/CFS for healthcare 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 and third sessions, currently 
in development, are aimed specifically at clinicians and, alongside the first session, will 
form a comprehensive package for NHS staff to be able to provide better care for patients 
with ME/CFS.  

The second session will focus on management in primary care, covering personalised 
activity plans, concomitant conditions, such as mast cell activation syndrome and postural 
tachycardia syndrome, the psychological impact of being diagnosed with the condition, 
and what is not ME/CFS. The third session will cover management in secondary care, 
focusing on patients with more severe ME/CFS that require hospitalisation. This includes 
information on treatments and their potential benefits and risks, management of a patient 
who requires hospital admission, provision of a minimum stimuli environment, and support 
for healthcare professionals.  

The Medical Schools Council will promote the NHS England e-learning package on 
ME/CFS to all United Kingdom medical schools, and encourage medical schools to 
provide undergraduates with direct patient experience of ME. The General Medical Council 
(GMC) is the regulator of medical schools, and it is important that education is reenforced 
at different stages of medical training. Royal Colleges play an important role in this. The 
GMC has included ME/CFS in the content map for the new national exam so all medical 
schools will need to teach it as a subject. 

NICE supports the development of e-learning materials that are consistent with NICE 
guidance and will promote the NHS England e-learning package on the guideline page on 
their website when available.  

Next steps 

Under the previous government, the Department published the ME/CFS interim delivery 
plan in August 2023, alongside a public consultation which closed in October 2023. It has 
been my priority since my appointment to publish a summary of responses to this 
consultation, which we are intending to publish in December.  Following the publication, 
we will reconvene the ME/CFS Task and Finish Group, including senior DHSC and cross-
government officials, and ME/CFS specialists and representatives from NHS England, 
NICE, 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 2025. The plan will focus on boosting research, improving 
attitudes and education, and bettering the lives of people with this debilitating disease.  

NHS England has agreed to support the implementation of the final delivery plan and is 
also establishing a specific working group to determine if additional support can be 
provided to commissioners of ME/CFS services. A stock take of existing ME/CFS services 
in England is being undertaken as an initial step. NHS England has offered to update you 
on progress.   

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 NHS England colleagues in the south west of England have engaged with Royal Devon 
University Healthcare NHS Foundation Trust (RDUH) on your report and Maeve’s care. 
RDUH is in the process of developing formal pathways for acute admission and 
emergency admission for patients with ME/CFS. NHS England has agreed to share this 
with you in due course.  

NICE has agreed to review the evidence on dietary management and strategies for people 
with severe ME/CFS published since the 2021 NICE guidelines were introduced, and 
amend guidance as needed. It will consider appropriate amendments to the guideline on 
ME/CFS to emphasise the need for appropriate nutritional support. NICE will work with 
colleagues from RDUH to determine examples of good practice to link into NICE guideline 
pages.    

I hope this response is helpful in demonstrating our commitment to bolster care and 
support for people living with ME/CFS. Thank you for bringing these concerns to my 
attention.   

Yours sincerely,

From: 
To: 
Sent: Wed Oct 16 2024 15:57:22 BST 
Subject: RE: Death of Maeve Bernadette Boothby O'Neill (ref: 8057264) 

(Attachments:) Maeve Boothby reg 28 report amended .docx 

Ref: 

Dear 

,  

Thank you for your request of 7th October.  

We are specifically responding to section 5 (2) 'During the course of the inquest it became clear that there 
was no current available funding for the research and development of treatment and further learning for 
understanding the causes of ME/Chronic Fatigue Syndrome (CFS).' 

UK Research and Innovation (UKRI) recognises the unmet clinical need for better diagnosis and 
treatments for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and has 
prioritised research into ME/CFS for a number of years. Since 2019, the Medical Research Council 
(MRC), part of UKRI, has invested £3.6m in research in partnership with the National Institute for Health 
Research (NIHR) addressing ME/CFS and maintains an open highlight notice to encourage ME/CFS 
research. MRC continues to engage with researchers, patient representatives and charity funders to 
identify routes to catalyse biomedical research in this area.  

The DecodeME study, a major investment co-funded with the NIHR, is a £3.2m programme investigating 
the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to 
search for genetic differences that may indicate underlying causes or an increased risk of developing the 
condition. This study aims to increase our understanding of the disease and therefore contribute to the 
research base on diagnostic tests and targeted treatments for ME/CFS. In 2020, the NIHR, the Chief 
Scientist Office (CSO) in Scotland, and the MRC also funded the James Lind Alliance Priority Setting 
Partnership for ME/CFS, facilitated by the charity Action for ME, seeking to identify and publicise research 
priorities in this area  

More broadly, the MRC funds research across the research and development pathway to improve human 
health, including fundamental and mechanistic biology, and translational research through to early phase 
clinical trials. Applications are judged in open competition and the primary considerations in funding 
decisions are scientific quality and importance to human health. 

Kind regards, 

Medical Research Council 

www.mrc.ukri.org 

Please print this email only if necessary 

The Medical Research Council is part of UK Research and Innovation

Chair                     

Chief Executive 

Medical Schools Council 
20 Tavistock Square 
London WC1H 9HD 

T: +44 (0)20 7419 5494 
www.medschools.ac.uk 

Coroner area of The County of Devon, Plymouth and Torbay  

By email 

26 November 2024 

Dear Ms Archer 

Regulation 28 Response - Maeve Bernadette Boothby O’ Neill 

Thank you for sharing the Regulation 28 report of 7 October 2024 with the Medical Schools Council 
(MSC). I would like to start this response by expressing my deepest condolences to Maeve’s family 
and friends on behalf of MSC. The circumstances of her death were deeply troubling, and I thank 
you for bringing them to our attention. 

MSC is the membership body for medical schools in the UK and as such it has no power to compel 
medical schools to change curricula or require that content be delivered in a certain way. The 
General Medical Council (GMC) is the regulator of undergraduate medical education and is 
responsible for quality assuring medical schools. However, I have looked into how ME/CFS is taught 
and assessed across medical schools, and I have some information that I hope you will find 
reassuring. 

The GMC has introduced a new national licensing exam for all students graduating in the 
2024/2025 academic year. As part of this process, it had to define what conditions and 
presentations would be assessed in this exam so students could adequately prepare and medical 
schools could ensure that their teaching covered all relevant conditions. Chronic fatigue syndrome 
is specifically mentioned as a condition in the Content Map for this important assessment meaning 
medical schools will include it in their teaching. 

I also asked medical schools to send me some examples of how they teach this important area, and 
I would like to share with you some of the responses; 

We have a learning event in Year 1, in which students will learn about the clinical features, 
proposed pathophysiological mechanisms and biopsychosocial interventions for 
management for chronic fatigue syndrome/ME, fibromyalgia and post-covid syndrome. The 
students will build on this session in subsequent years. We think it is important to highlight 
the burden associated with these diseases and sequalae that can occur. 

In our curriculum we do cover CFS and chronic widespread pain. We have teaching materials 
on it in the Y4 Musculoskeletal and in the GP block and we cover the important area of 
differential diagnosis for fatigue. 

Medical Schools Council: Company limited by guarantee and registered in England and Wales number 8817383. Registered charity number 1155370. 
Registered Office: Woburn House, 20 Tavistock Square, London WC1H 9HD 

 
 
 
 
 We try, as other medical schools do, to integrate experts by lived experience into our 
curriculum… we are fortunate to have the input of a patient living with chronic fatigue/ME 

Additionally, the Department for Health and Social Care shared their response to this section 28 
request with me and I can confirm that I have shared NHS England e-learning package on ME with 
medical schools. 

I would like to finish by stressing that medical school is the first step of a long process of education 
and training that doctors in the UK undertake. It is important that lessons learnt in undergraduate 
medical education are built on when a doctor enters postgraduate medical education and training. 
MSC is not responsible for these stages of training which are regulated by the GMC. The curricula 
for specialty and GP training are developed by medical Royal Colleges who are also responsible for 
the assessment of specialist knowledge. In order that Royal Colleges and GMC are aware of this 
case I am copying in Professor 

, Director of Education and Standards at GMC and 

, Director of Education and Quality at the Academy of Medical Royal Colleges.  

Regards 

Director 
Medical Schools Council 
clare.owen@medschools.ac.uk  

CC - Professor Colin Melville, Director of Education and Standards, GMC 
Rose Jarvis, Director of Education and Quality, AoMRC 

Medical Schools Council: Company limited by guarantee and registered in England and Wales number 8817383. Registered charity number 1155370. 
Registered Office: Woburn House, 20 Tavistock Square, London WC1H 9HD

Ms Deborah Archer 
Assistant Coroner  
County of Devon, Plymouth and Torbay 
County Hall 
Topsham Road 
Exeter 
EX2 4QD  

National Medical Director  
NHS England  
Wellington House 
133-155 Waterloo Road  
London 
SE1 8UG 

27 November 2024  

Dear Coroner, 

Re: Regulation 28 Report to Prevent Future Deaths – Maeve Bernadette 
Boothby O’Neill who died on 3 October 2021  

Thank  you  for  your  Report  to  Prevent  Future  Deaths  (hereafter  “Report”)  dated  7 
October  2024  (amended  on  8  October  2024)  concerning  the  death  of  Maeve 
Bernadette  Boothby  O’Neill  on  3  October  2021.  In  advance  of  responding  to  the 
specific concerns raised in your Report, I would like to express my deep condolences 
to Maeve’s family and loved ones. NHS England are keen to assure the family and the 
Coroner  that  the  concerns  raised  about  Maeve’s  care  have  been  listened  to  and 
reflected upon.   

Your  Report  raises  concerns  over  the  care  provision  in  England  for  patients  with 
severe Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) and that 
there is currently no available funding for research and development of treatment for 
the condition.  

NHS England has engaged with the Department of Health and Social Care (DHSC), 
who we note your Report was also addressed to, on these matters. Following a period 
of consultation with key stakeholders, including those with lived experience, and the 
publication  of  the  interim  delivery  plan  on  ME/CFS  in  late  2023  under  the  last 
Government, the DHSC have confirmed to NHS England that the development of a 
final ME/CFS Delivery Plan to improve the experiences and outcomes for people with 
the  condition  remains  a  priority  and  that  it  is  their  intention  to  publish  a  response 
summary before the end of the year.  

The  summary  will  be  shaped  by  the  consultation  responses,  along  with  continued 
close  engagement  with  stakeholders, and, with  relevance  to  the concerns  raised  in 
your Report, will encompass the three broad themes of: 

1.  Attitudes and education 
2.  Research 
3.  Living with ME.  

It is intended that the final delivery plan will be published  by the end of March 2025. 
NHS England will support the DHSC on the implementation of the delivery plan and 

                                                                                                                       
 
 
 
 
 
 
 
  
 
 
 
 
 
 
  
 we  would  refer  the  Coroner  to  the  DHSC  for  further  information  on  this,  as  well  as 
details of existing investment and funding for research into ME/CFS. 

In addition, NHS England has also established a specific working group to determine 
if additional support can be provided to commissioners of ME/CFS services. A stock 
take of existing CFS/ME services in England is being undertaken as an initial step. If 
it is of assistance, we can provide further updates as this work progresses.  

Your  Report  also  raises  the  concern  that  there  is  limited  training  for  doctors  on 
ME/CFS and how to treat it, particularly for cases of severe ME. There is currently a 
limited  evidence  base  for  the  treatment  of  severe  ME/CFS,  which  does  create 
challenge  to  developing  educational  resource.  However,  in  May  this  year,  in 
development  with  DHSC,  NHS  England  published  the  first  of  three  new  e-learning 
modules. An ‘Introduction to ME/CFS’ provides an overview of the potential causes, 
diagnostic criteria and management strategies.  A further two modules, aimed at the 
NHS  clinical  workforces,  are  now  in  development,  the  first  of  which  will  cover 
management in primary care, followed by the third module which will provide guidance 
on the management of severe ME/CFS in secondary care settings.  

It  is  appropriate  that  the  National  Institute  for  Health  and  Care  Excellence  (NICE) 
responds to the Coroner on your fourth concern regarding NICE guidance on ME/CFS 
and nutrition support for adults. NHS England has engaged with NICE on the concerns 
raised in your Report and will carefully consider the response from NICE in due course.  

My regional colleagues in the South West have also considered your Report and have 
engaged with Royal Devon University Healthcare NHS Foundation Trust (RDUH) on 
your Report and the care delivered to Maeve. We understand that RDUH are in the 
process of developing formal pathways for acute admission and emergency admission 
for patients with ME/CFS and that the details of these will be shared with the Coroner 
by the Trust.  

I  would  also  like  to  provide  further  assurances  on  the  national  NHS  England  work 
taking  place around  the  Reports  to  Prevent Future  Deaths.  All  reports received  are 
discussed  by  the  Regulation  28  Working  Group,  comprising  Regional  Medical 
Directors,  and  other  clinical  and  quality  colleagues  from  across  the  regions.  This 
ensures  that  key  learnings  and  insights  around  events,  such  as  the  sad  death  of 
Maeve, are shared across the NHS at both a national and regional level and helps us 
to  pay  close  attention  to  any  emerging  trends  that  may  require  further  review  and 
action.   

Thank you for bringing these important patient safety issues to my attention and please 
do not hesitate to contact me should you need any further information.  

Yours sincerely,  

 
 
 
 
 
   
  
 
 
 National Medical Director

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

+44 (0)300 323 0140 

21 November 2024  

Deborah Archer 
Assistant Coroner 
HM Coroners Office (Administration)  
County of Devon, Plymouth and Torbay 
By email: 

Your reference: 
Our reference: 

Dear Ms Archer 

Re: Regulation 28 Prevention of Future Deaths Report in respect of Maeve 
Bernadette Boothby O’Neill 

I write in response to your regulation 28 report regarding the tragic death of 
Maeve Boothby O’Neill. I would like to express my sincere condolences to 
Maeve’s family and loved ones.  

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

Following discussions with colleagues in the NHS and at the Department of 
Health and Social Care (DHSC), we understand they will respond fully to points 1 
to 3. We make the following observations. 

1.  During the course of the evidence it became clear that there were no 
specialist hospitals or hospices, beds, wards or other health care 
provision in England for patients with severe Myalgic encephalomyelitis 
(ME). This meant that the Royal Devon and Exeter Hospital had no 
commissioned service to treat Maeve and patients like her. 

Our guideline on myalgic encephalomyelitis (or encephalopathy)/chronic 
fatigue syndrome (ME/CFS): diagnosis and management [NG206] 
recommends that care for people with ME/CFS should be supported by 
advice and direct clinical consultation from an ME/CFS specialist team. 
Service commissioning and delivery is the responsibility of the relevant NHS 
body. 

 
 
 
 
 
  
 
  
 
 
 2.  During the course of the inquest it became clear that there was no 

current available funding for the research and development of treatment 
and further learning for understanding the causes of ME / Chronic 
Fatigue Syndrome (CFS).  

NICE guidelines are developed by independent committees. During 
development, committees often identify areas for which there are 
uncertainties in the evidence or for which robust evidence is lacking. They 
can make recommendations for research that are likely to inform future 
decision-making (based on a systematic assessment of gaps in the current 
evidence).  

During development of the NICE guideline on ME/CFS, the committee made 
a number of recommendations for research, including one on dietary 
strategies. 

3.  During the course of the inquest it became clear that there was 

extremely limited training for Doctors on ME/ CFS and how to treat it – 
especially in relation to severe ME. 

NICE has supported the development of e-learning materials consistent with 
NICE guidance on ME/CFS. They have been produced by the NHS England 
Technology Enhanced Learning team and we will link to them from the 
guideline page on our website as they are published. 

4.  During the course of the inquest it became clear that the 2021 NICE 

guidelines on ME did not provide any detailed guidance at all on how 
severe ME should be managed at home or in the community and in 
particular whether or not there is any necessary adaptation needed to 
the 2017 guidance on Nutrition support for adults : oral nutrition 
support , enteral tube feeding and parenteral nutrition .  

The remainder of our response focuses on point 4 as actions to address this 
concern are within NICE’s control. 

Our guideline includes recommendations on care for people with severe or 
very severe ME/CFS (section 1.17). They include general recommendations 
on dietary management and strategies. We were not able to make more 
specific recommendations due to a lack of good quality evidence. For this 
reason, the committee made the research recommendation noted above.  

This section does refer to the NICE guideline on nutrition support for adults: 
oral nutrition support, enteral tube feeding and parenteral nutrition [CG32].  

                                                                                                                          Page | 2 

 
 
 
  
 
  
 While this guideline (CG32) is not specific to ME/CFS, there are 
recommendations on indications for nutrition support in hospital and the 
community (section 1.3). They say that healthcare professionals should 
consider enteral tube feeding in people who are malnourished or at risk of 
malnutrition, defined as having eaten little or nothing for more than 5 days 
and/or being likely to eat little or nothing for the next 5 days or longer 
(recommendation 1.3.2).  

There is also guidance on what nutrition support to give (section 1.4) and how 
to monitor nutrition support (section 1.5). It also includes a specific section on 
supporting patients in the community with enteral feeding (section 1.9).  

Actions proposed 

In response to your report, and our learning and reflections following Maeve’s 
death, we will:  

• 

review the evidence on dietary management and strategies for people with 
severe or very severe ME/CFS published since NG206 was introduced to 
determine if any specific amendments to the guideline are needed in this 
area.  

•  work with colleagues from the Royal Devon University Healthcare NHS 

Foundation Trust to see if there are examples of good practice that we can 
link to from our guideline pages. 

•  consider appropriate amendments to the guideline on ME/CFS to emphasise 

the need for appropriate nutritional support. 

Additionally, we are already working with colleagues from our external supplier 
that produces NICE Clinical Knowledge Summaries (CKS) to determine if any 
updates to the section on fatigue are possible. 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. 

I hope this response is helpful in confirming what NICE recommends and the 
actions that we will take because of your report relating to Maeve. I would like to 
reiterate my condolences to her family.  

Yours sincerely 

Chief Executive 

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