For those who are having difficulties in reading the whole text, I suspect that section 5 is the most important one as it presents the suggested actions to take:
5. Agreed actions
To address the problems identified and achieve the impact proposed by our stakeholders, we have agreed the following actions.
Research
The UK Clinical Research Collaboration (UKCRC) Research Working Group has committed to rapid actions which will provide the foundation of evidence generation and insight into the medium and long term actions. These actions started in December 2022, with planned delivery before spring 2024. In parallel, the group will identify a plan for future actions and a sustainable legacy.
1. The Department of Health and Social Care (DHSC) will support the Research Strategy subgroup to hold workshops with funders, academics and people with ME/CFS on how to develop research questions to respond to the PSP Top 10+ priorities and initiate new clinical studies. This will help increase research funded in this area by bringing new and existing researchers to the field to discuss feasible, clear and meaningful research applications.
2. DHSC will work with research funders to commission a landscaping review of national and international work underway in ME/CFS, map PSP research priorities against these and establish evidence gaps. This will enable researchers to target proposals at identified gaps and funders to consider which are most needed.
3. The Medical Research Council and the National Institute for Health and Care Research will raise awareness of research funding opportunities for researchers and highlight the PSP Top 10+ ME/CFS research priorities publicly and with decision-making bodies. This will provide further guidance to researchers, including those new to the field, as to how to find and apply for funding in a competitive process. Raising awareness of the PSP Top 10+ priorities will emphasise the value of those priorities to researchers, those involved in funding decisions, patients and the public to enable high-quality applications to be prioritised for funding.
4. As part of the Research Working Group, a charity and patient group collaboration will support funders to raise awareness of mechanisms for effective patient and public involvement and engagement (PPIE) in research, ensuring diversity across protected characteristics, geographical areas and severity and duration of disease. This will increase the co-production of research, ensure proposals are informed by personal experience, targeted to patient need, and increase competitiveness of proposals for funding.
5. DHSC will support the Research Working Group to develop case studies of research that show good practice, including effective PPIE. This will show exemplars to researchers and funders to improve future the research application and review process.
6. DHSC will support the Research Working Group to engage with the initiatives to educate clinicians and practitioners about ME/CFS (for example, the NHS England e-learning module to be developed on ME/CFS). This will ensure that researchers, researcher clinicians and research funders are supported to engage with new educational resources on ME/CFS.
Attitudes and education of professionals
7. DHSC will consider how to increase our knowledge of public sector professionals’ current attitudes towards ME/CFS, to help show where there are gaps in understanding that need to be targeted - by September 2024.
8. NHS England will develop an e-learning module on ME/CFS, which will be aimed at professional staff working in health and social care services but can also be accessed by other professionals and members of the public. The development process will involve a range of stakeholders, including professionals and people with personal experience of ME/CFS - by end March 2024.
9. NHS England and the NHS Health at Work Network will update their webpages on ME/CFS - by end March 2024.
10. On education about ME/CFS, DHSC will:
- ask relevant stakeholders to consider developing a shared learning resource (such as case studies or videos) on ME/CFS which could be held in an education hub, as a central resource for education and training purposes, by the end of March 2024
- request that the Medical Schools Council encourage shared learning and the NHS England e-learning package on ME/CFS to all UK medical schools and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS, to raise awareness among medical students, by the end of March 2024
- use its networks to raise awareness of the new NHS England e-learning module on ME/CFS once completed and to encourage stakeholders to do this also along with the updated NICE guideline on ME/CFS (NG206)
11. DfE will:
- encourage special educational needs and disability (SEND) and medical condition organisations to signpost the NHS England e-learning on ME/CFS on their websites, once completed in 2023, so that staff who interact with those with ME/CFS in education can access it
- update the guidance on education for children with health needs who cannot attend school - primarily for local authorities - in 2023, to make clear the role that home schools play to deliver education to pupils with health needs and the duty of local authorities to arrange suitable education where the home school is unable to (the home school is the school at which the child was on roll before their health needs impacted upon their education)
- share guidance developed by Action for ME, informed by views of children’s social care professionals, with wider children’s social care professionals, by the end of March 2024
- signpost e-learning on ME/CFS, once developed by NHS England to providers
DfE has already updated
remote education guidance to provide more information on the circumstances under which remote education should be considered, after it has already been established that a pupil is, or will be, absent from school
12. The British Association of Social Workers will support and promote the work of stakeholders to raise awareness and knowledge within the social work profession, about the needs of people with severe and very severe symptoms of ME/CFS, including unpaid carers, for example by sharing case studies, publishing articles and circulating guidance, by the end of March 2024.
13. The General Medical Council will include ME/CFS in the scope of the Medical Licensing Assessment that will be launched in 2023.
14. The Royal College of Physicians will ensure that their training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians, by the end of March 2024 and ongoing.
15. Healthcare practitioners from across disciplines and people with personal experience will come together to produce a ‘Language matters in ME/CFS’ guide to further the learning and insights gained from the interim delivery plan process. This will support both professional and patient understanding of effective use of language in the context of ME/CFS, while an aligned document will help people with personal experience get the best from their consultations. The work will be led by an independent clinician, supported by a DHSC secretariat, by the end of July 2024.
Broader actions to improve awareness and understanding
16. DHSC will collaborate with stakeholders to:
- increase awareness among people with ME/CFS and their unpaid carers of support available from adult social care and how to access it by collaborating with stakeholders to disseminate information and guidance (adult social care services), by September 2024.
- increase awareness among people with ME/CFS and their unpaid carers about how to feed back or make a complaint about care, treatment or service they have received by sharing information about their rights under the NHS Constitution and how to navigate the NHS complaints process (health services), by the end March 2024
- identify how best to raise public awareness of ME/CFS, by the end of March 2025
17. DHSC and DWP (where appropriate) will work with stakeholders to disseminate information and guidance to increase awareness among all disabled people, people with health conditions, employers and relevant organisations of support available and how to access it, by September 2024.
Improving statutory support
18. The Law Commission will review existing social care legislation relating to disabled children, to improve clarity for families about the support that they are legally entitled to, ensuring that local authorities know what they are expected to provide, and families know how to access support - timescale to be determined.
19. DHSC will work with stakeholders to consider how to better support health commissioners and providers to understand the needs of people with ME/CFS, what local service provision should be available and how existing national initiatives to improve accessibility of health services can be adapted or best utilised for people with severe or very severe ME/CFS - by July 2024.
20. DHSC will engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families as well as best practice in relation to safeguarding responsibilities - by July 2024.
21. DWP is committed to making its services easier to access for everyone, irrespective of their condition. How this will happen is set out in
Transforming support: the health and disability white paper, published in March 2023. People with ME/CFS, as well as other people with disabilities, will benefit from the changes underway, which are intended to:
- make it easier for people to apply for benefits
- improve people’s experience of assessments by exploring ways to simplify the claim and assessment process to improve transparency, support greater understanding and increase trust in the system
- look at ways to enhance assessment expertise
- improve the information provided about benefits and the application process
- improve how evidence is used
- reduce unnecessary assessments
Is this what is meant by the NHS England webpage or is that something else? The NHS one was the top result when I searched for it. 
