Recipient

Medical Research Council

First report 8 Oct 2024•Latest report 8 Oct 2024

Recipient record

Reports, concerns and published responses

Other public bodies · Sub-organisation. This page brings together reports naming this recipient and response statements clearly connected to concerns raised in those reports.

Reports: 1
Published responses: 100%
Concerns addressed: 1
Stated actions: 5

Reports over time

Reports naming this recipient by issue year.

Evidence profile

Report topics

Share of this recipient’s reports compared with all other recipients.

100%published responses found

5stated actions described

Topic comparisons are not available in the current evidence snapshot.

Concerns and recipient responses

Statements from Medical Research Council linked to the concerns in each report. Select any concern, action or position to view the source wording.

8 Oct2024
Devon, Plymouth and Torbay
Concerns raised4
1. Extremely limited doctor training on ME/CFS treatment, especially severe ME
2. Lack of specialist healthcare provision for patients with severe ME
3. Failure of NICE guidance to provide detailed guidance on managing severe ME at home or in the community
1. Lack of current funding for ME/CFS treatment research and understanding of causes
Responses linked to these concerns
Each statement is shown once, even when linked to more than one concern.
Actions described in response 3
1. Action
  Maintain an open highlight notice to encourage ME/CFS research proposals.
  Stated completed
2. Action
  Co-fund the DecodeME programme investigating genetic factors underlying ME/CFS and informing diagnostic and treatment research.
  Stated in progress
3. Action
  Invest in ME/CFS research addressing unmet needs through MRC funding in partnership with NIHR.
  Stated completed
AI-generated summary

Maeve Boothby O’Neill · Prevention of Future Deaths report

This summary was generated using AI from the published report. Please read the original report for the complete account.

Report summary

Maeve Boothby O’Neill, who had severe ME and was bedbound, died at home on 3 October 2021 after three hospital admissions during 2021. The report identified concerns about the lack of specialist care provision for severe ME, limited research funding and medical training, and insufficient guidance on managing severe ME in the home or community, including nutritional support.

Read the report on judiciary.uk
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below. The report was sent to Medical Research Council; that does not assign responsibility.
PFD Monitor interpretation
Extremely limited doctor training on ME/CFS treatment, especially severe ME
Wider context from the report
“(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. ”
Open source report
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below. The report was sent to Medical Research Council; that does not assign responsibility.
PFD Monitor interpretation
Lack of specialist healthcare provision for patients with severe ME
Wider context from the report
“(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 encephalopathies (ME). This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her. ”
Open source report
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below. The report was sent to Medical Research Council; that does not assign responsibility.
PFD Monitor interpretation
Failure of NICE guidance to provide detailed guidance on managing severe ME at home or in the community
Wider context from the report
“(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 . ”
Open source report
Source evidence
How this individual concern was interpreted
PFD Monitor created a concise, searchable interpretation from the report wording shown below. The report was sent to Medical Research Council; that does not assign responsibility.
PFD Monitor interpretation
Lack of current funding for ME/CFS treatment research and understanding of causes
Wider context from the report
“(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). ”
Open source report
Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation
Maintain an open highlight notice to encourage ME/CFS research proposals.

Verbatim wording from the response
“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.”

Source location
Response from MRC
Page 1 · response
Published 8 October 2024
Open published response
Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation
Co-fund the DecodeME programme investigating genetic factors underlying ME/CFS and informing diagnostic and treatment research.

Verbatim wording from the response
“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 Scientific 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.”

Source location
Response from MRC
Page 1 · response
Published 8 October 2024
Open published response
Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation
Invest in ME/CFS research addressing unmet needs through MRC funding in partnership with NIHR.

Verbatim wording from the response
“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.”

Source location
Response from MRC
Page 1 · response
Published 8 October 2024
Open published response

Information checked against published PFD reports and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Data last updated 7 September 2026

Reports, concerns and published responses

Reports over time

Concerns raised4

Extremely limited doctor training on ME/CFS treatment, especially severe ME

Lack of specialist healthcare provision for patients with severe ME

Failure of NICE guidance to provide detailed guidance on managing severe ME at home or in the community

Lack of current funding for ME/CFS treatment research and understanding of causes

Actions described in response An action is something this recipient says it has done, is doing, or plans to do in response to the concern raised.3

Actions described in response 3