Report evidence summary
Concerns raised 4 Extremely limited doctor training on ME/CFS treatment, especially severe ME Part of recurring concern: Inadequate professional competence in ME/CFS care View source Lack of specialist healthcare provision for patients with severe ME View source Failure of NICE guidance to provide detailed guidance on managing severe ME at home or in the community View source Lack of current funding for ME/CFS treatment research and understanding of causes View source See 1 more concern
Stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised. 23
Medical Schools Council Share the NHS England e-learning package on ME with medical schools.
View source
National Institute for Health and Care Excellence Review post-NG206 evidence on dietary management for people with severe or very severe ME/CFS to determine whether guideline amendments are needed.
View source
National Institute for Health and Care Excellence Work with the external CKS supplier to determine whether updates to the fatigue section are possible.
View source
National Institute for Health and Care Excellence Work with Royal Devon University Healthcare NHS Foundation Trust to identify good-practice examples for linking from NICE guideline pages.
View source
National Institute for Health and Care Excellence Consider appropriate ME/CFS guideline amendments emphasizing the need for appropriate nutritional support.
View source
Department of Health and Social Care Develop an e-learning course on ME/CFS for healthcare professionals with NHS England.
View source
Department of Health and Social Care Publish a summary of responses to the ME/CFS interim delivery plan consultation.
View source
Department of Health and Social Care Work with the ME/CFS community to identify opportunities to increase research.
View source
Department of Health and Social Care Publish the ME/CFS interim delivery plan alongside a public consultation.
View source
Department of Health and Social Care Reconvene the ME/CFS Task and Finish Group with cross-government, clinical, service and stakeholder representatives.
View source
Department of Health and Social Care Develop and publish the final ME/CFS delivery plan informed by consultation responses and stakeholder engagement.
View source
Department of Health and Social Care Fund high-quality ME/CFS research through national research funding programmes.
View source
Medical Research Council Maintain an open highlight notice to encourage ME/CFS research proposals.
View source
Medical Research Council Continue engaging researchers, patient representatives and charity funders to identify routes for biomedical ME/CFS research.
View source
Medical Research Council Fund the ME/CFS Priority Setting Partnership to identify and publicise research priorities.
View source
Medical Research Council Co-fund the DecodeME programme investigating genetic factors underlying ME/CFS and informing diagnostic and treatment research.
View source
Medical Research Council Invest in ME/CFS research addressing unmet needs through MRC funding in partnership with NIHR.
View source
NHS England Undertake a stocktake of existing CFS/ME services in England.
View source
NHS England Develop two further ME/CFS e-learning modules covering primary-care management and severe ME/CFS management in secondary care.
View source
NHS England Publish an introductory e-learning module covering ME/CFS causes, diagnosis and management.
View source
NHS England Establish a working group to determine additional support for ME/CFS service commissioners.
View source
NHS England Support DHSC implementation of the final ME/CFS Delivery Plan.
View source
NHS England Discuss Prevention of Future Deaths reports through the Regulation 28 Working Group and share relevant learning across national and regional NHS services.
View source
× Source evidence
How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do 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. Response links show a clear evidence connection; they do 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 .
” Is this part of a recurring concern? No recurring-concern membership is currently published.
Open source report × Source evidence
How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do 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 .
” Is this part of a recurring concern? No recurring-concern membership is currently published.
Open source report × Source evidence
How this individual concern was interpreted PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do 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) .
” Is this part of a recurring concern? No recurring-concern membership is currently published.
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 Share the NHS England e-learning package on ME with medical schools.
Verbatim wording from the response “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.” Source location Response from MSC
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 Review post-NG206 evidence on dietary management for people with severe or very severe ME/CFS to determine whether guideline amendments are needed.
Verbatim wording from the response “In response to your report, and our learning and reflections following Maeve’s death, we will:” Source location Response from NICE
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 Work with the external CKS supplier to determine whether updates to the fatigue section are possible.
Verbatim wording from the response “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.” Source location Response from NICE
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 Work with Royal Devon University Healthcare NHS Foundation Trust to identify good-practice examples for linking from NICE guideline pages.
Verbatim wording from the response “In response to your report, and our learning and reflections following Maeve’s death, we will:” Source location Response from NICE
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 Consider appropriate ME/CFS guideline amendments emphasizing the need for appropriate nutritional support.
Verbatim wording from the response “In response to your report, and our learning and reflections following Maeve’s death, we will:” Source location Response from NICE
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 Develop an e-learning course on ME/CFS for healthcare professionals with NHS England.
Verbatim wording from the response “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” Source location Response from DHSC and NIHR
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 Publish a summary of responses to the ME/CFS interim delivery plan consultation.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 Work with the ME/CFS community to identify opportunities to increase research.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 Publish the ME/CFS interim delivery plan alongside a public consultation.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 Reconvene the ME/CFS Task and Finish Group with cross-government, clinical, service and stakeholder representatives.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 Develop and publish the final ME/CFS delivery plan informed by consultation responses and stakeholder engagement.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 Fund high-quality ME/CFS research through national research funding programmes.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
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 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
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 Continue engaging researchers, patient representatives and charity funders to identify routes for biomedical ME/CFS research.
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
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 Fund the ME/CFS Priority Setting Partnership to identify and publicise research priorities.
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
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
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
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 Undertake a stocktake of existing CFS/ME services in England.
Verbatim wording from the response “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.” Source location Response from NHSE
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 Develop two further ME/CFS e-learning modules covering primary-care management and severe ME/CFS management in secondary care.
Verbatim wording from the response “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.” Source location Response from NHSE
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 Publish an introductory e-learning module covering ME/CFS causes, diagnosis and management.
Verbatim wording from the response “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.” Source location Response from NHSE
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 Establish a working group to determine additional support for ME/CFS service commissioners.
Verbatim wording from the response “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.” Source location Response from NHSE
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 Support DHSC implementation of the final ME/CFS Delivery Plan.
Verbatim wording from the response “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.” Source location Response from NHSE
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 Discuss Prevention of Future Deaths reports through the Regulation 28 Working Group and share relevant learning across national and regional NHS services.
Verbatim wording from the response “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.” Source location Response from NHSE
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The Medical Schools Council cannot compel medical schools to change curricula or require particular content to be delivered.
Verbatim wording from the response “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.” Source location Response from MSC
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Postgraduate medical education and training are outside the Medical Schools Council’s responsibility.
Verbatim wording from the response “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.” Source location Response from MSC
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The GMC regulates and quality assures undergraduate medical education, including the relevant curriculum standards.
Verbatim wording from the response “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.” Source location Response from MSC
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation The GMC regulates postgraduate training, while medical Royal Colleges develop specialty and general practice curricula and assess specialist knowledge.
Verbatim wording from the response “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.” Source location Response from MSC
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation NICE could not make more specific severe ME/CFS dietary recommendations because good-quality evidence was lacking.
Verbatim wording from the response “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.” Source location Response from NICE
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation Commissioning and delivery of ME/CFS services are the responsibility of the relevant NHS body.
Verbatim wording from the response “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.” Source location Response from NICE
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation It is inaccurate to say that no funding is available for ME/CFS research and treatment development.
Verbatim wording from the response “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.” Source location Response from DHSC and NIHR
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation NHS England, NICE and the Medical Schools Council will address concerns falling within their respective areas of competence.
Verbatim wording from the response “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” Source location Response from DHSC and NIHR
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation NICE is responsible for responding to concerns about ME/CFS guidance and nutrition support for adults.
Verbatim wording from the response “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.” Source location Response from NHSE
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation DHSC is responsible for providing further information on the ME/CFS delivery plan and existing research investment and funding.
Verbatim wording from the response “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.” Source location Response from NHSE
Open published response
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Source evidence
How this respondent position was interpreted
PFD Monitor created a concise, searchable interpretation from the published response wording shown below.
PFD Monitor interpretation RDUH is responsible for developing and sharing formal acute and emergency admission pathways for patients with ME/CFS.
Verbatim wording from the response “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.” Source location Response from NHSE
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