Closed consultation

My full reality: the interim delivery plan on ME/CFS

Updated 4 September 2023

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Ministerial foreword

I am delighted to publish this interim cross-government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has been developed in close partnership with people with ME/CFS, carers, professionals, charitable bodies and other significant organisations. I would like to thank everyone involved to date for their time and enthusiasm for this work. We have used a co-production approach to respect the core principles that we outlined at the start of this journey on World ME Day, 12 May 2022:

• firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes
• secondly, that we must trust and listen to those with personal experience of ME/CFS

I know that ME/CFS affects the lives of many children and adults across the country. It can be an incredibly disabling condition that makes it difficult for people to take part in everyday activities, enjoy a family or social life, access services and engage in work or education - especially for the estimated 25% of people who have severe or very severe symptoms.

This interim delivery plan sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision. With the right advice, care and adaptations provided by the NHS, social care, education, the welfare system and employers, I am confident that people with ME/CFS can be supported to manage their symptoms as effectively as possible, contribute more to our society and maximise their quality of life. The interim delivery plan is a significant step forward in delivering that vision.

For the time being, the interim delivery plan covers the population of England. However, to help inform the final scope of the plan, the Scottish Government is keen to understand the views of stakeholders in Scotland on aspects where there might be the potential to consider any common approaches or relevant actions within a Scottish context. The Welsh Government and Northern Ireland Executive are also keen to review the views of their residents on the interim delivery plan so that they can consider the implications for local policy.

I commend this interim delivery plan to you and invite you to submit comments using our survey if you are a resident of the UK aged 13 or over. The final delivery plan will be published later this year, taking the comments received into account.  

Helen Whately, Minister of State for Social Care

Executive summary

This cross-government interim delivery plan on ME/CFS has been developed in close consultation with the ME/CFS community and other key stakeholders responsible for service delivery. By bringing together many key organisations at national level and people with personal experience, we have a unique opportunity to tackle the challenges facing those living with ME/CFS and their families and carers.

The interim delivery plan was developed around 3 key themes: research, attitudes and education, and living with ME/CFS. The latter theme was then further sub-divided into topics covering children and young people, social care, health, welfare, employment and quality of life. Working groups were formed for each theme and workshops focusing on the ‘Living with ME/CFS’ topics were held to gather more evidence and views.  

Research

The first area within the interim delivery plan is research. Here, the working group identified key problems surrounding low capacity and capability to respond to research needs, low awareness of need of research in ME/CFS and low levels of funded research.  

Six rapid actions are proposed for completion as part of this interim delivery plan. UK Clinical Research Collaboration (UKCRC) working groups will develop case studies of research, engage with the initiatives to educate clinicians and practitioners about ME/CFS research and support funders to raise awareness of opportunities for research funding and how to involve patient and public involvement and engagement (PPIE) in research for ME/CFS.

Through the National Institute for Health and Care Research (NIHR), we will commission a landscaping review of national and international work underway in ME/CFS and support workshops with funders, academics and people with ME/CFS on how to develop research questions to respond to the James Lind Alliance Priority Setting Partnership (PSP) Top 10+ priorities.

Attitudes and education of professionals

The second theme of the interim delivery plan concerns attitudes and education of professionals. Here the working group agreed several key problems to be addressed which describe the experience of some people with ME/CFS who report not feeling believed by professionals, with the impact of ME/CFS on daily life not being understood or acknowledged and current professional attitudes towards ME/CFS not being well evidenced. Also identified were the limited opportunities for education and training in ME/CFS, at both an undergraduate and postgraduate level for all professional groups. 

Actions are proposed in response to these problems for completion by the end of March 2024 and the end of March 2025. These will focus on education and training, with NHS England developing an e-learning module on ME/CFS, which will be available both to all professional groups and the public. The Medical Schools Council will promote 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. The Royal College of Physicians will ensure that its training on ME/CFS keeps pace with research and the latest guidance.

Broader actions include ensuring that widely available information on ME/CFS is kept up to date, for example the NHS England public webpage. The Department for Education (DfE) has also agreed to take action to share training on ME/CFS and update guidance.

Living with ME/CFS

For all 6 sections within this theme, key problems were identified, such as the reduced quality of life for people with ME/CFS, their family members and unpaid carers. We heard about the struggle that some people face to access appropriate specialist ME/CFS services, routine healthcare and social care support, particularly for people with severe and very severe symptoms. For children and young people and their families, accessing education and safeguarding referrals are priority issues. There are welfare and employment concerns which include the difficulties faced when navigating the benefit process and occupational health systems.

In response, there are broader actions proposed to improve awareness and understanding of the services that are available to people who need additional support, including carers. Other actions cover the improvement of this support, such as the Law Commission reviewing existing social care legislation relating to disabled children, and further discussions with stakeholders about health services and adaptations to support better access.

After publication of the final delivery plan on ME/CFS 

After publication of the final delivery plan, a new ME/CFS delivery group will meet every 6 months to agree how to monitor performance, discuss progress with the delivery plan actions, share learning and consider how to address challenges. 

1. Introduction

ME/CFS is a long-term health condition that remains poorly understood, despite affecting an estimated 241,000 children and adults in England.^{[footnote 1]} It is a complex, multi-system, chronic medical condition. It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue - it lasts longer, and even minimal mental or physical activity can make symptoms worse.

According to the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS (NG206), the 4 symptoms essential for a diagnosis of ME/CFS are:

• debilitating fatigue that is worsened by activity, which is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
• post-exertional malaise after activity in which the worsening of symptoms is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer
• unrefreshing sleep or sleep disturbance (or both), which may include feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia
• cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multi-tasking

Other common symptoms may include severe pain, sensitivity to heightened sensory stimulation, postural orthostatic tachycardia syndrome (POTS) and gastrointestinal problems. Symptoms can fluctuate in severity and over time, particularly for people who are affected at a mild or moderate level. It is estimated that 1 in 4 adults diagnosed with ME/CFS are so severely affected that they are house-bound or bed-bound, with little functional capacity, needing 24-hour care.^{[footnote 2] [footnote 3]} This can last for months or years. In rare cases, the outcome has been fatal.

The NICE guideline on ME/CFS describes levels of severity.

The case for change

Research

More research is needed to understand the causes and possible treatment options for ME/CFS. The Research chapter of this interim delivery plan sets out what the problems are, what change is needed and what best practice research looks like. It is recognised that ME/CFS can have a devastating effect on the lives of those who suffer from it, and those close to them, and research can hold the key to improving the quality of life for people with ME/CFS.

This is a quote provided by a member of the Research Working Group who has ME/CFS:

After 30 years of living with ME and waiting for a step change in how ME/CFS is understood, I’m excited by the government ME/CFS taskforce to drive forward quality research into this disease. I am now looking forward to seeing the recommendations in the delivery report approved.

Attitudes and education of professionals

Healthcare professionals face many challenges when providing care to children, young people and adults with ME/CFS. These include, but are not limited to, difficulties in diagnostics, treatments and even communicating the diagnosis. The absence of a confirmatory test means a diagnosis is often delayed while potential alternative causes of their symptoms are excluded. When the diagnosis is confirmed, the therapeutic options are limited to some symptom control, interventions for co-morbid conditions and lifestyle modification.

Explaining the disease to the patient and their family is difficult as we do not know the definitive underlying cause. Expressions such as ‘normal test results,’ ‘functional disease’ or ‘medically unexplained symptoms’, although medically accurate, can be interpreted as the patient not being believed and this can create barriers between people with ME/CFS and their clinicians. Staff can feel frustrated by the lack of answers they have to offer people. Uncertainty can influence the tone of advice given by health professionals to other staff working in a range of public services.^{[footnote 4]} A lack of updated educational provision for professionals adds to the complexity.^{[footnote 5]}

Perhaps because of these challenges, many people with ME/CFS and their family members report experiencing dismissive attitudes, stigma and misconceptions from professionals about the nature and impact of ME/CFS on their life. This is not acceptable. The following quotes by a family carer, a person with ME/CFS and a specialist clinician working in ME/CFS illustrate these experiences:

Some people make a false assumption that people with ME are malingering. Or just anxious. Or that your brain is telling you things that are not true.

It is easier to blame the patient rather than acknowledge that ME/CFS is not well understood and there are no specific treatments to address the cause.

The difficulties classifying and agreeing on the nature of ME/CFS mean it is difficult to place within existing undergraduate training programmes.

The impact of such attitudes can be profound for individuals and those close to them. We have heard that poor responses from some professionals have led to many people in the ME/CFS community feeling ashamed and let down by the public sector. In some cases, people in the ME/CFS community have resolved to stay away from health and welfare services, had suicidal thoughts or even taken their own lives.^{[footnote 6]} The Attitudes and Education chapter of this interim delivery plan sets out the problems to be addressed, how we will know when these have been addressed and what best practice in attitudes and education looks like.

Quality of life

As for many debilitating long-term health conditions, research shows that quality of life for people with ME/CFS and their families and unpaid carers can be severely impacted.^{[footnote 7]} A quote by a person with ME/CFS that demonstrates this:

Huge grief as your life crumbles and all your plans, hopes and dreams are cancelled.

People with more severe symptoms of ME/CFS often feel ‘invisible’ to others, as the opportunity to take part in day-to-day activities can be limited or, in some cases, not possible. Many people have reported negative attitudes towards them from family members, colleagues and friends, due to misconceptions and lack of awareness about ME/CFS. The Living with ME/CFS chapter of this interim delivery plan focuses on how public services can best support children and adults with ME/CFS in the context of overall quality of life, education and social care for children and young people, health services for everyone, adult social care services, welfare support and adaptations needed to maintain or enter employment.

The economic case

There are strong economic reasons to address ME/CFS. The 20/20 Health ‘Counting the cost’ report estimated that a weighted minimum cost to the UK of ME/CFS is £3.3 billion, using a cautious assumption of 0.4% prevalence (based on studies calculating costs for April 2014 to March 2015).

Although the focus of this interim delivery plan remains ME/CFS, we expect that some of the learning and suggested outcomes could also benefit people who have other long-term health conditions (for example, long COVID, fibromyalgia and chronic pain), where there are some common symptoms such as enduring fatigue, muscle pain and cognitive impairment due to difficulties with concentration.^{[footnote 8]} We have heard that people with these symptoms can experience some of the same difficulties as people with ME/CFS, including feeling that their condition is not always appropriately accepted by others.^{[footnote 9]}

Chapter 5 lists the proposed actions that will be taken to address all the issues described in this case for change.

Developing the cross-government interim delivery plan

On 12 May 2022, World ME Day, the government committed to develop a cross-government interim delivery plan on ME/CFS, directed by 2 guiding principles:

1. we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes
2. we must trust and listen to those with personal experience of ME/CFS

We engaged stakeholders, including people living with ME/CFS, unpaid carers and staff working in services to advise us on what should be included in the interim delivery plan. Initial discussions helped us to identify 3 important themes:

• research into ME/CFS
• attitudes and education of professionals on ME/CFS
• improving quality of life for people living with ME/CFS

A working group was set up to focus on each theme and develop the content of this interim delivery plan. Each group discussed their experiences and knowledge of ME/CFS using the Theory of Change model:

1. Defining the problems to be addressed and exploring the causes and effects - this stage was important to ensure that all stakeholders had sufficient understanding of different perspectives, which enabled clear problem statements to be agreed.
2. Describing the impact to be achieved - this was an opportunity for the stakeholders to set out what success would look like to them, when the problems were solved.
3. Suggesting the actions needed to achieve that impact - there were a large number of suggestions, so each working group discussed and agreed which ones were most likely to be achievable and deliver the desired impact.

In this interim delivery plan, an ‘action’ is a specific task that an organisation or person has agreed to do, within a certain timescale. Some suggested actions have been categorised as ‘best practice’ instead, because they describe how systems, organisations or people should behave or operate, all the time.

People with personal experience of ME/CFS, including unpaid carers, were nominated by the charity Action for ME to join the working groups. One of the 2 co-chairs of each working group was a person with personal experience and other places were made available on the groups for people with personal experience. Forward ME (an umbrella organisation for some ME charities) was asked to nominate members to the working groups. In total, 42 people with personal experience of ME/CFS were involved in meetings and topic-based workshops. They were also able to feed in additional views from other people.

Recent developments on ME/CFS

Important recent developments have provided a solid foundation for this interim delivery plan:

• January 2020: funding was announced for the DecodeME genomic research study
• October 2021: NICE published its updated guideline on ME/CFS (NG206)
• 12 May 2022:
  • the NICE implementation statement on ME/CFS
  • the All-Party Parliamentary Group on ME report: ‘Rethinking ME’
  • the James Lind Alliance Priority Setting Partnership report on ME/CFS Top 10+ research priorities: ‘Defining future ME/CFS research’
  • the government announced its intention to develop a cross-government interim delivery plan on ME/CFS in a written statement to Parliament

2. Research

Problem statements

1. There is low capacity and capability among the research community to respond to research needs in this area.
2. Historically, there has been low awareness of the need and scope for research into ME/CFS across the health and care research landscape.
3. There has been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden.
4. There remains a lack of trust between different stakeholders, including a perception of bias, expressed by patient and carer groups, about prioritisation and the peer-review process when applied to ME/CFS research.

Background

Research can hold the key to improving the quality of life for people with ME/CFS. Research into the condition is an underserved area and there is low capacity and capability among the research community to respond to the research needs. In some areas, there is a lack of trust between research funders, academics, charities and people with personal experience of ME/CFS.

As announced in the written ministerial statement published in May 2022, the government is keen to increase and improve research in ME/CFS. The UK is a world leader in science, with a world-class research infrastructure. It is vital that we continue to support researchers to better understand ME/CFS.

Research to understand disease mechanisms, especially in large studies, is in the early stage of development. Given that the causes and mechanisms of this condition are still poorly understood, it is important that both research into the pathophysiology of this disease and research into treatments to improve symptoms and quality of life are prioritised. Research in scope includes, but is not limited to, questions related to cell biology, genetics and biomarkers, immunology, diagnostics, clinical trials, drug re-purposing and epidemiology. See UK Research and Innovation’s (UKRI) ‘Researching ME/CFS: highlight notice’ for more information.

The government funds ME/CFS research through NIHR, UKRI via the Medical Research Council (MRC), and via the Chief Scientist Office (CSO) in Scotland. The MRC has provided £4.15 million of ME/CFS research funding since 2013, including £3.19 million, jointly awarded with NIHR for the DecodeME project. The NIHR has committed around £3.9 million of programme funding over the same period. This figure does not include the co-funding for DecodeME. NIHR, MRC and CSO have received a small number of research applications relative to the disease burden and want to encourage an increase in high-quality research applications.

To stimulate further research in this area, MRC and NIHR co-funded the DecodeME project in 2020. DecodeME aims to empower future research by revealing underlying genetic risk factors and facilitating future studies through the provision of an open source data and sample base. The NIHR, CSO and the MRC also funded the James Lind Alliance PSP for ME/CFS, facilitated by the charity Action for ME. The report sets out the Top 10+ research priorities for ME/CFS. These recommendations have been co-produced through a process led by a steering group of people living with ME/CFS, carers and clinicians.

Personal experience members of the Research Working Group have commented:

I am really excited by the potential for the ME/CFS delivery plan to lead to real improvements for people with ME. My daughter lost her teenage years to ME; she deserves a better future.

It is encouraging to see plans starting to form that should lead to more high-quality research proposals, that people with personal experience of ME are at the heart of developing plans and there is strong support for patient participation in the research process.

Establishing the Research Working Group

At the Secretary of State’s request, Professor Lucy Chappell (DHSC Chief Scientific Adviser and Chief Executive Officer of NIHR) and UKCRC agreed to establish a 2-year research working group into ME/CFS. The UKCRC brings together the major stakeholders that influence clinical research in the UK. The purpose of this expert group was to:

• raise awareness of research into ME/CFS among funders and the research community
• build trust between research funders, researchers, charities and people with personal experience of ME/CFS (including carers) and address historical stigma
• respond to identified evidence needs on ME/CFS, building on strategic investments nationally and internationally; starting with, but not limited to, a consensus of research priorities developed through the James Lind Alliance PSP on ME/CFS, the updated NICE guideline and the All-Party Parliamentary Group on ME recommendations
• consider which research would have the greatest impact for people with ME/CFS in the short, medium and longer term - and the sequencing of the research questions and dependencies on data and/or knowledge generation from other studies
• encourage and support researchers to develop high quality research into ME/CFS that is co-produced, from inception to dissemination, with people with personal experience of ME/CFS
• proactively foster increased capacity and capability among the research workforce, building on the response to recent long COVID calls and bringing in a range of multi-disciplinary researchers
• review progress on the aims and support a sustainable research trajectory for ME/CFS

The Research Working Group is committed to delivering 6 rapid actions set out in chapter 5 and has set up subgroups to progress these. Further developments will evolve following the initial actions and monitoring. The subgroup themes are as follows.

The research strategy subgroup works to:

• consider the direction for ME/CFS research - what research would have the greatest impact for people with ME/CFS in the short, medium and longer term
• consider inter-dependencies on data and/or knowledge generation from other studies
• develop PSP and NICE evidence priorities into tractable research questions

The building capacity and capability of the research community subgroup works to:

• encourage and support researchers to develop high quality research into ME/CFS, co-produced, from inception to dissemination, with people with personal experience of ME
• proactively foster increased capacity and awareness among the research workforce, bringing in a range of multi-disciplinary researchers as required to answer the research gaps in this area
• consider if there are skills gaps to improve capability, and how these might be addressed

The raising awareness of ME/CFS and building trust between stakeholders subgroup works to:

• raise awareness of research into ME/CFS
• build trust between research funders, researchers, charities and people with personal experience of ME/CFS
• reduce stigma

Impact: how we will know when this interim delivery plan has delivered on research

We will know that the interim delivery plan has delivered the necessary changes when there is greater awareness of the need and scope for research among the research community, so that the research and evidence needs for ME/CFS are recognised and addressed. This will mean that researchers from a wide range of relevant specialisms and disciplines are producing high-quality research, commensurate with disease burden, co-produced with people with personal experience. Research into ME/CFS is exploring diversity and inclusivity in the population, including protected characteristics, disease severity and duration. We will also have a sustainable pipeline of research, the findings of which feed into policy and practice for ME/CFS. 

The Research Working Group will work with research funders to identify metrics and milestones to ensure that a sustainable pipeline of research is becoming reality.

Best practice

Research must ensure diversity across protected characteristics, geographical areas and severity and duration of disease.

Patient and public involvement and engagement should be embedded from inception to dissemination. Research should refer to NIHR’s national standards for patient and public involvement and expectations for researchers and funders.

There needs to be consideration of appropriate outcome measures and of stratification of patient groups to ensure trials are sufficiently powered.

Studies should include reference to appropriate diagnostic criteria and robust outcome measures that enable comparison between studies.

For the rapid actions that will be taken to progress with research, see chapter 5.

3. Attitudes and education of professionals

As the first stage in the ‘Theory of Change’ process, the Attitudes and Education Working Group spent time discussing and confirming what the priority problems are about professional attitudes and education. This happened before the group discussed the impact to be achieved and the actions needed to address those problems.

Problem statements

1. Many children and adults with ME/CFS feel that they have not been believed, supported or treated equally across all settings and professional groups.
2. There is limited objective evidence for what current attitudes are towards ME/CFS among most health, social care and other professionals.
3. Many people with personal experience do not feel that professionals always fully acknowledge or understand the impact of ME/CFS on their daily life.
4. There remain concerns about how best to manage and approach ME/CFS in some services, despite the updated NICE guideline on ME/CFS (NG206).
5. There is limited appropriate undergraduate and postgraduate healthcare professional training on ME/CFS.
6. There are limited appropriate educational opportunities on ME/CFS for other professional groups (for example, social care, education, welfare, employers).

As referenced in the ‘case for change’ section at the start of this interim delivery plan, many people with ME/CFS and their family members report experiences of dismissive attitudes towards them from some professionals and feel stigmatised because of having ME/CFS. They told us that this has led to them not feeling heard or understood and in some cases disengaging with services who are there to support them. We know how important it is to have positive and open communication between people with long-term health conditions and the professionals who support them. The language used can have a significant impact on how someone feels about themselves, their illness and their value in society. See the supporting information to this interim delivery plan for more evidence about the use of language that is frustrating and upsetting to people with ME/CFS.

We heard some positive comments from people with ME/CFS and unpaid carers about good support received from specialist ME/CFS services and individual professionals. Some examples from people with ME/CFS are:

I feel incredibly lucky to have accessed the services of the X. It is probably a literal lifesaver. The GPs I saw were sympathetic but had no knowledge of ME/CFS. X is immensely experienced and compassionate. She was able to explain things so clearly and to work with me on tactics to adapt to my chronic condition. I’ve worked with her over nearly 5 years now, and seen improvements in my mental health, as I grow more accepting of limitations, and more understanding of how best to manage energy levels. She’s also given excellent advice on re-building physical strength and confidence. I cannot stress enough how important the clinic has been to me. With the clinic’s support and advice, I can be cautiously active, to continue working part-time, and to feel more accepting about having a chronic condition.

I cried when X told me that I had a diagnosis as it meant I was no longer fighting this on my own. I was treated with respect and kindness by the whole service.

It was so beneficial to speak to people to understand and who can help me understand my ME/CFS. It’s like the pieces of the jigsaw are being put together and I have been given strategies to implement to help manage my condition.

This demonstrates that, where professionals and people living with ME/CFS recognise that they are on a journey together, professionals can provide high-quality, personalised care to people with ME/CFS and this makes a real difference to that person, their family and other supporters. (Doctors with ME: what does good practice look like? has more examples from a patient perspective.)

This interim delivery plan aims to ensure that more people with ME/CFS have this kind of positive experience when they seek advice and support.

Our discussions have highlighted that the way that some professionals communicate, particularly when using official medical terminology, can cause distrust and upset to people with ME/CFS. Thoughtful use of language can be a key to building trust and relationships and cannot be emphasised enough in this context.

As referenced in the ‘case for change’ section, professionals face many challenges in providing appropriate services to children, young people and adults with ME/CFS. Whatever the difficulties, professionals working in public services should still treat people as individuals and with attitudes that show respect and dignity. The NHS Constitution for England, for example, confirms the 6 values that should underpin everything done by NHS staff - working together for patients, respect and dignity, commitment to quality of care, compassion, improving lives and everyone counts.

The updated NICE guideline on ME/CFS (NG206) was an important development as it clarifies how to diagnose the condition and provides recommendations on appropriate management of ME/CFS in children, young people and adults, based on the best evidence available at the time. Despite there being no recommended treatments, the guideline clarifies how patients can still benefit from professional support and advice, including help to pace their energy, manage pain and come to terms with what may be a drastic change in their life. Many healthcare workers are striving to follow this guidance, as far as they can. The NICE process highlighted gaps in knowledge and the need for more research to find explanations for causes and identify possible treatments.

During our working group discussions, some health professionals expressed disappointment that their colleagues, including commissioners of services, were not always aware of the latest NICE guidance or fully engaged with it and that misconceptions about the condition persist.

An ME/CFS therapist said:

On a recent training day I ran, a health professional said, ‘we shouldn’t give people with fatigue wheelchairs as they would then choose not to walk.’ So, there is a significant misconception that disability is choice rather than consequence.

An ME/CFS specialist doctor said:

The lack of numbers of well-informed colleagues significantly limits the quality of medical care that can be provided. As ME/CFS is a multi-system condition, it would benefit from clinicians from a range of specialities developing an interest in it and contributing to management and treatment options for patients.

We are confident that improving the quality of information and education available about ME/CFS for professionals will support them in developing a more positive and informed attitude towards the condition and provide more holistic support to those living with it. We need to reach people while they are training to qualify and staff who are already qualified, particularly as experienced practitioners may have received outdated or very little education on ME/CFS.

Both the professional and patient community have acknowledged the need to work in partnership, to face and resolve the challenges of ME/CFS together. Historically, there have been strong opinions expressed by both sides and it is recognised that perceived difficulties in working together may have slowed down progress in research and our understanding of how best to support people with ME/CFS.

Bringing together the different stakeholders in this area is complex and should be undertaken with sensitivity to the needs and past experience of participants, ensuring that everyone feels welcome, respected and able to express their views honestly and openly. ME/CFS research projects such as DecodeME and the James Lind Alliance PSP have demonstrated that stakeholders can work together to achieve shared aims and build trusting and mutually beneficial relationships. Also, we are encouraged by the fact that this has been achieved in the context of other long-term conditions, where complementary developments in professional culture (such as more empathetic use of language), greater availability of medicines (which increase the ability of doctors to offer help to address symptoms) and technological advances (which increase our ability to detect problems and diagnose illness) have all helped to change professional attitudes and approaches and offer an improved experience for patients.

Impact: how we will know when this interim delivery plan has delivered on attitudes and education

We will know that the interim delivery plan has delivered the necessary changes we would like to see to attitudes of professionals when:

• people with ME/CFS feel that they are believed, understood and treated with respect, without feeling blamed for being ill, staying ill or experiencing deteriorating symptoms
• people with ME/CFS feel accepted, safe and supported by services available to them and are confident to approach professionals for advice and support
• people with ME/CFS feel that they are experiencing the same standard of care as people with other long-term health conditions
• family, other unpaid carers and supporters of someone with ME/CFS are listened to and involved in decisions, where the person with ME/CFS is happy for them to be involved - these friends and supporters are seen as being experts with experience, whose views are respected, and they are able to advocate for the person with ME/CFS, with the permission of that person

We will know that the interim delivery plan has delivered the necessary changes we would like to see to professional education when appropriate, consistent training and education on ME/CFS, accredited by credible sources, is available for all professionals, including at undergraduate and post graduate level. Appropriate information and Continuing Professional Development opportunities are available for relevant professional groups. Training content includes personal stories and experiences, with people with ME/CFS appropriately involved in design and delivery. As a result of this training, professionals and other staff are more comfortable with ambiguity, uncertainty and witnessing suffering and be able to manage their own feelings, as well as those of their patients. Staff feel that they have the level of knowledge that they need to understand, interact with and support people with ME/CFS appropriately.

Best practice

The advice from the Attitudes and Education Working Group is that there are several ways in which professionals can show positive attitudes about ME/CFS and ensure appropriateness and quality of educational materials:

• professionals should ask questions to explore and acknowledge the impact that ME/CFS can have on people’s lives, taking the time to communicate clearly in ways that build trust, acknowledge gaps in knowledge, enable understanding and manage expectations appropriately (see Doctors with ME: what does good practice look like?)
• obligations towards people with ME/CFS should be understood as well as the risks of not meeting those obligations; professionals should understand that their support can have a significant positive impact on the experience and outcomes for people with ME/CFS
• when exercising their judgement, professionals and practitioners should take the updated NICE guideline on ME/CFS (NG206) fully into account, alongside the individual needs, preferences and values of their patients or the people using the service
• employers should promote inclusive employment of people with ME/CFS in both professional roles and in peer-support roles within ME/CFS services, with adaptions in the workplace being recognised as good practice
• educational material on ME/CFS for professionals should:
  • include case stories and videos - for example, on the reality of life with ME/CFS, what people want from professionals and what professionals can do to help
  • help professionals to understand the cognitive impairment aspect and fluctuating nature of ME/CFS - how someone can appear well, without obvious symptoms at a point in time
  • encompass uncertainty and how to manage this, and what to do/how to help when patients do not improve
  • be accessible
• training sessions should include someone who has ME/CFS so that they can talk about their experience of the condition and answer questions - for example, hosted video sessions or lectures at medical schools

For the relevant actions on this theme, see chapter 5.

4. Living with ME/CFS

There are various services that are responsible for providing support to children and adults who live with ME/CFS as well as their families and supporters, who are giving unpaid care. Stakeholders have told us that there are opportunities now for existing services to support people with everyday life in better ways, while we wait for research to help identify new treatments.

The Living with ME/CFS Working Group agreed 6 key areas that members felt were most important to people living with ME/CFS and unpaid carers:

• overarching quality of life
• education, training for work and social care support (for children and young people with ME/CFS)
• health services
• adult social care support
• welfare support
• employment support

As the first step in the ‘Theory of Change’ process, the Living with ME/CFS Working Group spent time discussing and confirming what the priority problems are for these 6 themes and thinking about causes and effects. Once this step was completed, a series of workshop discussions were held to focus on each topic, involving a wide range of participants, including health and care professionals, people with personal experience and representatives from relevant services and organisations, to propose the desired impact to be achieved and suggested actions to be taken.

For the relevant actions, see chapter 5.

Quality of life

The Living with ME/CFS Working Group agreed that the following were the problems to address in relation to quality of life for people with ME/CFS.

Problem statements

1. Quality of life is often significantly reduced for adults and children with ME/CFS.
2. Quality of life is often significantly reduced for family and unpaid carers supporting someone with ME/CFS.

The workshop on quality of life held in September 2022 was an opportunity for stakeholders, including people with personal experience of ME/CFS and unpaid carers, to share their insight into how ME/CFS impacted their overall quality of life. Some themes emerging during the workshop and in feedback afterwards included:

• feelings of loss of previous independence, skills and abilities
• facing the stigma and discrimination of not being believed
• the potential for any contact, not just social, to worsen symptoms and lead to estrangement from family and friends and living in isolation^{[footnote 10]}
• the practical impact on everyday life including holidays, travel, mealtimes, relationships, finances and their ability to carry on working or studying
• the impact on unpaid carers, including family members, who are supporting someone with ME/CFS^{[footnote 11]}

Impact: how we will know when this interim delivery plan has delivered on quality of life

We will know that the interim delivery plan has delivered the necessary changes we would like to see to improve quality of life for people with ME/CFS and unpaid carers when, to the extent that their illness allows, children and adults with ME/CFS can engage in activities that are important and satisfying to them, as defined by each person. In addition, there is increased awareness among the general public of ME/CFS and how seriously it can impact on some people’s lives, meaning that children and adults with ME/CFS and their families and unpaid carers feel supported, believed and less alone. 

Best practice

Advice from the Living with ME/CFS Working Group is that wider society should recognise that ME/CFS is a disability and make reasonable adjustments for people with ME/CFS.

For the actions relevant to quality of life, see chapter 5.

Support for children and young people with ME/CFS

The Living with ME/CFS Working Group agreed that these are the problems to address to improve education and social care provision to children and young people with ME/CFS.

Problem statements

1. Children and young people with ME/CFS struggle to get the right support to help them succeed in education and training.
2. Children and young people with ME/CFS and their family can face inappropriate safeguarding referrals to children’s social care and investigations.

We understand from people with personal experience that ME/CFS can impact children and young people differently to adults for a variety of reasons. Children and young people are still developing their understanding of the world and their place within it; their education can be significantly disrupted and there are differences between children’s and adult services. We also know that not all experiences of ME/CFS are the same and it will impact the lives of children and young people to different extents.

We held a workshop, in October 2022, on support for children and young people with ME/CFS. This was an opportunity for stakeholders, including parents and unpaid carers of children and young people with ME/CFS, to share their insight into current problems and how services could better support them.

Some comments from parents of children with ME/CFS were:

No belief that ME was long term and that they would need to look at the whole length of time the child might be at that school.

The home tuition provision was inappropriate as the local authority said you can only have 2-hour sessions at a time. Face-to-face is very demanding and the 2-hour sessions couldn’t be broken down. We were told if we couldn’t access the full 2 hours then the provision would stop.

Safeguarding investigations are unnecessarily undertaken. Carers are accused of Fabricated or Induced Illness by proxy (FII). Families fear children with ME being removed from the only reliable care available.

We were so lucky that the social worker who came in was lovely and used to visit us and identified we were both absolutely fine and coping well, but it continued until she was 16.

A professional working in a ME/CFS service commented:

The pressure on children to always be engaged in education even when experiencing significant health problems, along with schools having constant monitoring of attendance.

ME/CFS is a medical condition and, therefore, state-funded schools have a duty (under section 100 of the Children and Families Act 2014) to make arrangements to support relevant pupils. Some children and young people with ME/CFS may also be considered to be disabled, under the definition in the Equality Act 2010. Some may also have special educational needs (SEN), under the definition in the Children and Families Act 2014.

Impact: how we will know when this interim delivery plan has delivered on education and social care services for children and young people

We will know that the interim delivery plan has delivered the necessary changes when the following conditions are in place.

Under-18 education in schools and colleges

Effective in-setting support:

• the setting (school or college) will follow established good practice and put in place relevant support; they will work in partnership with the child or young person and their family, recognising that they are experts by experience, and with relevant health professionals. The effectiveness of the support package should then be kept under regular review, again working in partnership
• children and young people with ME/CFS will have as full access as possible to education and the life of the setting (for example, access to school trips) as at section 7 of the Education Act 1996; the starting principle should be for the child or young person to spend as much time as they can in the setting accessing face-to-face learning - schools will work with pupils and parents to support them to maximise their attendance in line with DfE’s Working together to improve school attendance guidance, taking into account the impact of each individual’s medical condition including their capacity to expend energy
• state-funded schools have a duty to put appropriate support in place and to have regard to the statutory guidance in Supporting pupils with medical conditions at school - the school may wish to agree with the child or young person’s health professionals and parent whether an individual healthcare plan, setting out the relevant support package, is appropriate; if so, in the context of this plan, schools should consider specific support for the pupil’s educational, social and emotional needs and staff training needs, taking into account the experiences of the child
• the setting will consider whether a child or young person’s ME/CFS constitutes a disability; if it does, there are additional duties on the education setting, including to ensure the child or young person is not discriminated against, either directly or indirectly, and to make reasonable adjustments to the setting’s policies and practice
• the setting will consider whether the child or young person has special educational needs, and where they do, follow all relevant duties, including having regard to the SEND code of practice for children and young people aged 0 to 25
• young people with ME/CFS who cannot study for a full timetable in college, where colleges can accommodate, will be able to access a part-time curriculum

Appropriate education for those who are not able to attend school

Local authorities should be ready to take responsibility for the education of any child or young person whose illness will prevent them from attending school for 15 or more school days, either in one absence or over the course of a school year, and where suitable education is not otherwise being arranged. Educational support may require a flexible approach appropriate to the needs of the child or young person that is tailored to their abilities whether face-to-face at school, remotely or at home.

The local authority and commissioners will work closely with medical professionals and the child or young person’s family and take into account the perspective of the child or young person to understand the needs of the child and how these may fluctuate and change over time, using this to determine the most appropriate full-time education provision (or as much education as their health condition allows them to participate in) - keeping this provision under continuous review to adapt to the child.

The local authority will not follow an inflexible policy of requiring medical evidence before making their decision about alternative education.

In collaboration with schools, local authorities should make every effort to minimise the disruption to education.

Children’s social care: support for families affected by ME/CFS

Children and young people with ME/CFS will benefit from the proposed changes to how children’s social care services provide support to the families of children and young people with disabilities. DfE’s Family Help reforms will ensure that support is both welcoming and non-stigmatising and focuses on providing practical help to both children and families.

Further and higher education and training (18 plus)

Supporting learning in adult training and higher education:

• where an individual’s ME/CFS constitutes a disability, education providers have a duty to make reasonable adjustments for young people and adults with ME/CFS to access further and higher education or training, under the Equality Act 2010. Further education colleges and higher education settings, including universities, have a legal duty to try to remove the barriers young people face in education because of a disability, including, where it is a disability, ME/CFS
• apprenticeships and traineeships must also make such reasonable adjustments for young people with disabilities
• higher education students can apply for Disabled Students’ Allowance where ME/CFS is a disability that affects an individual’s ability to study
• the setting will act reasonably to consider what support an individual requires to access education, taking into account the views of the individual with ME/CFS

Best practice

Advice from the Living with ME/CFS Working Group is that the following behaviours and actions will help to improve the experience of education and social care for children with ME/CFS and their families.

Education (under 18)

Health and education professionals involved in supporting a child or young person with ME/CFS should centre on the child or young person’s needs and voice. These professionals should work closely with the child or young person and their family to keep under review the package of support, to ensure the needs of the child or young person are properly understood and effectively supported, while also aligning with the school or college’s wider policies on medical conditions.

Educational staff should, when considering the support to put place for individuals with ME/CFS, align their practice with evidence-based good practice guidance including (in the case of state-funded schools) discharging their duty to have regard to the statutory guidance in Supporting pupils with medical conditions at school.

As set out in Working together to safeguard children, “Nothing is more important than children’s welfare. Children who need help and protection deserve high quality and effective support as soon as a need is identified”. As with any child with a health condition, there could be safeguarding concerns raised by the clinical team or education staff, in the child’s best interests. These would usually be shared with the family to make a collaborative plan involving social care support. 

Schools and colleges should consider ways to modify and tailor adjustments for children and young people with ME/CFS depending on their individual needs, preferences and severity of ME/CFS. This may include:

• timing lessons at the time of the day to match the optimal time for learning for the individual
• working with impacted individuals, parents and health professionals to anticipate future education needs of a child or young person with ME/CFS
• understanding the social and emotional impact of transitioning from home education to school or college education and potentially the need for additional support
• understanding that some students with ME/CFS may not have developed age-appropriate independence and may require more support
• continuing to support and continue communication with children and young people with ME/CFS who are unable to be present at school
• considering ways to support energy management, for example, by:
  • allowing rest breaks
  • avoiding specific activities that may cause flare ups
  • allowing children and young people to access a quiet space in school or college
  • reducing the need for a child or young person to carry books around
  • considering other methods of education delivery, for example, pre-recorded lessons delivered at home

It is common for those who have been unable to attend school due to symptoms, to feel anxious on their return. Support should be given as appropriate.

Medical evidence should not be required by schools or colleges in order to record absence as authorised when a child or young person is too ill to attend. It should only be asked for to understand what support and provision the student needs; and, in exceptional circumstances, if the school or college has a genuine and reasonable doubt about the authenticity of the illness or has good reason to doubt that the illness is preventing the child or young person from attending.

Disabled students are eligible for reasonable adjustments to an assessment or the way an assessment is conducted. Schools and colleges should discuss the individual needs with the student, and, where appropriate, contact the relevant awarding organisation for more information about the arrangements available.

Children’s social care

To ensure that support for children and young people with ME/CFS and their families is effective, local authorities should ensure that:

• social care professionals working in children’s services, who support families with a child with suspected or confirmed ME/CFS, engage with a child or young person’s health professionals, the family, and the child or young person themselves so they can understand how ME/CFS impacts the child or young person’s life
• social care professionals working in children’s services provide families with tailored support to help families continue caring for their child with ME/CFS and support any young carers to ensure that the child or young person’s needs are met
• professionals follow guidance set out in Working together to safeguard children. This includes the principle that anyone working with children should see and speak to the child: listen to what they say, take their views seriously, and work with them and their families collaboratively when deciding how to support their needs.

Further and higher education and training (18 plus)

Higher and further education and training providers should consider ways to modify and tailor adjustments for those with ME/CFS depending on their individual needs, preferences and severity of ME/CFS. This may include:

• flexible study - for example, online courses and university lectures being recorded, part-time study, or flexibility in participation in group meetings and activities
• provision of equipment or assistive technology to support learning
• considering ways to support energy management - for example, by allowing rest breaks and allowing individuals to access a quiet space

For the relevant actions on this theme, see chapter 5.

Provision of health services

The Living with ME/CFS Working Group agreed that these were the problems to be addressed in relation to provision of health services for children and adults who have ME/CFS.

Problem statements

1. Children and adults with ME/CFS often struggle to get adequate investigations and correct diagnosis in a timely manner from primary or secondary care, as well as obtain ongoing appropriate management support, including advice, supportive treatment, and review.
2. Existing ME/CFS services are not standardised in terms of what they offer children and adults with ME/CFS, and their data collection methods vary.
3. Children and adults with moderate, severe, or very severe ME/CFS often struggle to access healthcare for other health needs.
4. ME/CFS services can find it difficult to recruit and retain appropriately trained staff.

Children and young people experience ME/CFS, including at a severe level,^{[footnote 12]} but the majority of people with ME/CFS become ill between the ages of 20 and 40, the prime time for becoming independent, starting a career and building relationships. Health services can help people with ME/CFS to cope with their new situation and manage their symptoms, as far as the illness allows, as described in the NICE guideline on ME/CFS (NG206). NICE guidelines are not mandatory but present the latest advice based on available evidence.

Where children and adults with ME/CFS were able to access a local service that provided appropriate support to help them manage their condition, it is clear how this has benefited them in their everyday life (see Doctors with ME: what does good practice look like?). Some other examples shared with us by people with ME/CFS follow:

If it wasn’t for the clinic, I do not think I would have got any GSCEs or been in college now and that means so much. My life has changed. I still have ME, but I know how to deal with it better than I did and feel like I have a future.

Having one-to-one sessions with X and X being able to come and see me at home (really helped) because I wouldn’t have been able to make it to X as this would have caused a lot more fatigue. The things that X suggested for us to get like the support socks and tights have helped as well as teaching me different ways to think about things and what is exercise for me. Making me feel like I am not the only one with the condition.

Through the development process for this interim delivery plan, we heard that while there are well-informed, dedicated professionals who provide services that result in positive outcomes for children and adults with ME/CFS, there is substantial variability of experience and services provided with other people struggling to be diagnosed and find advice. (See the BACME CFS/ME National Services Survey, March 2019.)

We also heard that people with severe or very severe symptoms of ME/CFS can be the people who receive the least support from local services, as was reported also during the development of the NICE guideline on ME/CFS (NG206) (Appendix 2).

The formation of integrated care boards (ICBs) provides a new opportunity to better co-ordinate care across the various parts of the health system and capitalise on the opportunities for planning services across a larger geographic footprint. ICBs are the statutory organisations responsible for commissioning health services for their local population and collaborating with other partners to benefit health and wellbeing. There are 42 ICBs in England, covering a population of around 1 million people. ICBs replaced clinical commissioning groups in April 2022.

The workshop on provision of health services for children and adults with ME/CFS, in October 2022, was an opportunity for stakeholders, including people who had accessed or struggled to access health services, unpaid carers, advocates for people with severe symptoms and professionals who work within these services, to share their views and experiences. An advocate from an ME/CFS charity said:

Many people haven’t seen a doctor in years, they actually don’t get any medical support. There is no one to give that advice - they can’t get to the surgery and their GP won’t visit.

A clinician told us:

There is no standardised service specification or clinical pathway for adult services or children and young people … that is why the services delivered are so diverse geographically.

Some adults with severe and very severe symptoms of ME/CFS and their advocates reported being very distressed by contact with health services, due to lack of understanding and the impact of having to experience health settings without adaptations. A family carer told us that:

Just one trip [to the hospital] will be hugely devastating for someone with severe ME.

A case story provided by another family carer noted that a:

Letter written by Palliative Care and General Medical Consultant back in summer 2019 extremely helpful. X received much more appropriate and compassionate care. No major battles needed with hospital staff.

Impact: how we will know when this interim delivery plan has delivered on health services

We will know that the provision of health services has improved when the following conditions are in place:

• investigation, diagnosis, management support - children and adults with ME/CFS receive timely diagnosis and advice, which supports them to manage their condition and, where possible, prevent it from worsening
• standardised service offer and better data - commissioners and healthcare professionals are supported to follow and share best practice, including considering the updated NICE guideline on ME/CFS (NG206); people with ME/CFS participate in developing and reviewing services and we can use available data to understand the population of people with ME/CFS
• access to healthcare for other health needs - children and adults with ME/CFS (including those who are severely or very severely affected) are supported to access routine healthcare assessments, treatment and prevention activities for other health conditions, in ways that work well for each individual person; for example, this could be through remote monitoring or with adaptations made in hospital, to respond to individual needs
• recruitment and retention of staff in ME/CFS services - professionals working in ME/CFS services have the skills, experience and resources required to appropriately support people living with ME/CFS and develop their skills in the field; professional supervision is available to support all staff working in ME/CFS provision, including specialists providing support to those working in generalist settings

Best practice

Advice from the Living with ME/CFS Working Group is that the following behaviours and actions will help to deliver better health services for children and adults with ME/CFS:

• healthcare professionals and commissioners should give due regard to the updated NICE guideline on ME/CFS (NG206)
• healthcare professionals should consider making a referral for a continuing healthcare assessment for children and adults with severe and very severe ME/CFS and, where appropriate, an integrated health and care personal budget
• stakeholders should run national conferences for NHS clinicians, allied health professionals and social care professionals about ME/CFS to discuss the practicalities of delivering good integrated care
• all healthcare professionals should recognise that people with severe and very severe ME/CFS are likely to benefit from specialist medical care, specialist nursing care, specialist nutritional support and equipment in the home
• wherever possible, treatments should be offered to relieve specific symptoms and address causes; people with severe and very severe ME/CFS will also need to access routine care, such as dentistry and optometry, at home

For the actions relevant to improved support from health services, see chapter 5.

Provision of adult social care

The Living with ME/CFS Working Group agreed that the following problem should be addressed in relation to adult social care support.

Problem statement

Adults with ME/CFS and unpaid carers can struggle to access informed and appropriate social care support.

During the development of this interim delivery plan, we held a workshop in September 2022 and heard that some people with ME/CFS do not realise that if they are struggling with daily living tasks (such as preparing food, getting dressed, washing), they can ask for an assessment of their care and support needs by contacting their local council directly. A representative from a ME/CFS charity told us:

It’s really hard to find out what you’re entitled to and be well enough to persuade the councils that you should have it.

Services on offer might include personal care at home, meals delivery, assistive technology, aids and other equipment to support daily living activities, referral for home adaptations and to the voluntary sector for benefits advice. In addition, unpaid carers can contact their local council for a carer’s assessment to understand what support can be provided to help them to continue caring, such as accessing respite care.

Planning for alternative care, in case of an emergency, can also be discussed. One family carer said:

Not everyone has a family. Often people with ME don’t get to have a partner or children or relationships break down. So many people are being looked after by increasingly elderly parents and are terrified about what will happen to them when those parents die.

We also heard that some people have had difficult experiences when they engaged with adult social care services, partly due to process requirements but also because of staff lack of understanding about ME/CFS and how harmful it can be for people with severe and very severe symptoms to be supported in the wrong way. For example, some people with very severe symptoms have extremely low tolerance for sound, light or other sensory stimulation. We were also told that the lack of understanding of ME/CFS has led to negative consequences for people and families in relation to safeguarding decisions.

For most people, including people with ME/CFS who need support with activities of daily life, care begins at home. Research indicates that 81% of unpaid carers for people with ME/CFS are husbands, wives or partners and 16% of unpaid carers are parents or children. Unpaid carers play a vital role in our communities, and we all owe them a debt of gratitude. In December 2021, the white paper People at the Heart of Care was published, setting out a 10-year vision for reforming adult social care, which puts people at the centre of adult social care and aims to make sure that:

• people have choice, control and support to live independent lives
• people can access outstanding quality and tailored care and support
• people find adult social care fair and accessible

To move towards this vision, the government is taking forward ambitious reforms to the social care system. We will be investing in the workforce, better data and technology, and increasing oversight of the social care system. These will improve access, quality and personalisation of care, while also building long-term resilience in the sector.

Person-centred care is a key theme running through the vision of the white paper, and it is a principle that is applicable right across health and social care provision. Genuine choice and control about personalised care and support can enhance quality of life and enable independence in a way that matters to individuals. An important part of what we want to do is make this happen more consistently, so that everyone - no matter where they live - can benefit. We know that most people want to live in their own homes and communities wherever possible, and we want people with ME/CFS to be able to access the right social care support that enables that. Equally, families and unpaid carers of people with ME/CFS must also be supported to live happy, healthy and fulfilling lives.

Impact: how we will know when this interim delivery plan has delivered on adult social care

We will know that the adult social care problem has been addressed when adults with ME/CFS and unpaid carers are aware of the support that adult social care services provide and how to access it, with help from advocacy support and personalised care planning (including for their future care) where necessary. Care and support offered to adults with ME/CFS will be person-centred, acknowledging their individual needs and preferences. Adult social care staff will have sufficient knowledge of ME/CFS to adopt a person-centred approach when supporting individuals, recognising that it is important to take account the condition’s nature and the need for individualised care.

Best practice

Advice from the Living with ME/CFS Working Group is that the following behaviours and actions will help to resolve the problem faced by people with ME/CFS who need support from adult social care:

• before commencing the adult social care assessment process, social care staff should offer independent advocacy support if no other informal support is available and make reasonable adjustments to help people manage their energy
• social care assessment staff should consider each person’s situation and offer additional support as appropriate - for example, aids and adaptations, home care, continuing healthcare assessment, person-centred respite care, third party support to manage a direct payment, safeguarding, and planning alternative care in case of emergency
• local authorities should not automatically require eligible people with ME/CFS to engage with reablement prior to assessment, due to the risk of a harmful effect. They should consider each person as an individual and take specialist health advice as appropriate first. See Action for ME: support for social care professionals
• home care providers should risk assess the home environment if reduced levels of sensory stimulation are required - for example, low light and sound levels. Find resources for social care and home care professionals on the 25% ME Group website
• any unpaid carer who is supporting someone with ME/CFS should be offered a carer’s assessment when they come to the attention of the local council or ask for an assessment of their needs. Local authorities are required to offer to undertake a carer’s assessment for any unpaid carer who appears to have what may be an eligible need for support
• evaluation and research to inform best practice adult social care provision to support people with severe and very severe ME/CFS, and their careers, would be useful

For the relevant actions for this theme, see chapter 5.

Provision of welfare support

The Living with ME/CFS Working Group agreed that the following problem should be addressed in relation to welfare support.

Problem statement

Children and adults with ME/CFS and their family and unpaid carers can struggle to access benefits and find the process difficult to navigate.

In September 2022, we held a workshop on ‘Provision of welfare and support with employment’. This was an opportunity for stakeholders, including people with personal experience of ME/CFS and those working in statutory services and the voluntary sector, to share their insight into current problems, describe what a desired future vision would be like and suggest actions to improve the provision of welfare services.

Stakeholders frequently reported difficulties accessing welfare support, including specific difficulties due to the nature of ME/CFS. Some people with ME/CFS reported at the workshop that:

No one tells you what you’re entitled to, you have to spend so much time researching.

Very severe people can’t fill in forms or communicate so it’s not accessible without help.

You rest and do what you need to make it to the assessment, then they report on you at your best and they don’t see what happens after, what it costs to do that.

Challenges include that some claimants feel it is difficult to find out the benefits to which they are entitled. Some claimants are unclear how the Department for Work and Pensions (DWP) uses further medical evidence and some claimants reported that they felt their medical conditions and personal experiences were misrepresented in assessment reports.

Stakeholders said that the welfare system should:

• provide information so that anyone wanting to access welfare, including people with ME/CFS and their unpaid carers, has full understanding of how to access the benefits system and of the claims process
• be accessible to anyone who wants to apply for welfare, including people with ME/CFS, and provide the right support where needed through the process
• make the right decision the first time

About welfare services

DWP provides a wide range of disability-related financial support, including benefits, tax credits, payments, grants, and concessions. The main benefits paid to disabled people and people with long-term health conditions of working age fall into 2 groups:

• benefits for people who have a health condition or disability that affects their ability to work and who are unemployed or on a low income - these benefits are Employment Support Allowance (ESA) and Universal Credit (UC)
• benefits to help with some of the extra costs for disabled people and people with long-term health conditions, which are paid to people whether or not they have a job or income and aim to support independent living - the main extra costs benefit is Personal Independence Payment (PIP), which is replacing Disability Living Allowance (DLA) for adults

Entitlement to PIP and ESA or UC is not based on health conditions; entitlement is based on how those conditions impact on each person’s everyday life. People can have the same condition but can be affected in diverse ways, resulting in different outcomes from their PIP or ESA or UC claim.

3.2 million people receive PIP, in addition to 1.3 million people who still claim DLA. There are also 1.7 million people in receipt of ESA. 1.3 million were in receipt of both ESA and PIP or DLA as of May 2022.

In October 2022, there were 24,254 claimants on the PIP caseload in Great Britain with CFS as their primary disabling condition. DWP can only provide data for the primary disabling condition, so this may be an under-representation of true numbers as some people will have multiple conditions.

DWP also provides DLA for children, which is intended to help with the extra costs of looking after a child who is under 16 and has difficulties walking or needs much more looking after than a child of the same age who does not have a disability.

DWP’s vision for welfare support services

On 15 March 2023, DWP published ‘Transforming support: the health and disability white paper’. This sets out the department’s vision to help more disabled people and people with health conditions to start, stay and succeed in work.

With high numbers of job vacancies and a rise in remote working triggered by the pandemic, today’s labour market offers disabled people unprecedented access to work opportunities. By improving work incentives, more people will enjoy the financial benefits of a regular pay packet, as well as the positive impact on health and wellbeing for the individual and the wider benefits to society and the economy.

DWP set out the case for reform in July 2021 in ‘Shaping future support: the health and disability green paper’. During the consultation, DWP heard from more than 4,500 people and organisations on what proposals should be taken forward. From the responses, DWP understands that many disabled people want to work and could work, with the right support. It was clear that disabled people are more likely to stop working and, once out of work, less likely to return. That is why DWP is investing in employment support for disabled people and people with health conditions.

DWP understands that the health and disability benefits system can itself be a barrier to employment because it focuses on what people cannot do, instead of what they can. The current assessment process means that people need to be found to have limited capability for work and limited capability to prepare for work to get additional income-related support for a disability or health condition.

This approach encourages people to see themselves as being unable to work and DWP knows it can put people off from trying work or seeking employment support for fear of losing their benefits. DWP will give people confidence that they will receive support, for as long as it is needed, regardless of whether they are working. By removing the Work Capability Assessment, DWP will ensure that those who are able to can progress in or towards work, without the worry of being re-assessed and losing their benefits.

DWP knows how important it is that health assessors treat people with respect and that they work efficiently. While most people claiming health and disability benefits have a positive experience, DWP will also improve the overall experience of, and trust in, the benefits system for disabled people, making it easier to navigate and access support when applying for and receiving health and disability benefits.

DWP’s vision for the welfare system set out in the white paper reflects issues raised by ME/CFS stakeholders.

See relevant actions for this theme in chapter 5.

Provision of employment support

The Living with ME/CFS Working Group agreed that these were the problems to address, in relation to supporting people with ME/CFS, and their unpaid carers, to stay in work or secure employment.

Problem statements

1. Inclusive and flexible job opportunities (paid or unpaid) are limited for people with ME/CFS and recruitment processes often are not accessible.
2. Access to informed and appropriate human resources support, including occupational health, varies in the workplace for people with ME/CFS and unpaid carers.

For many people with ME/CFS, living with the condition will have a significant impact on their ability to start or continue in employment. Some people will need to stop paid work altogether; others may need to reduce their hours or need additional support from their employer to manage their work alongside their symptoms. 

In addition to the qualitative benefits that people gain from employment, there are strong economic reasons to address the disability employment gap. The 20/20 Health ‘Counting the cost’ report from 2017 concluded that DWP paid in excess of £100 million annually in ESA and Disability Support Allowance to people with ME/CFS as the primary condition, between April 2014 and March 2015.

The workshop on provision of welfare and support with employment in September 2022 was an opportunity for stakeholders, including people with personal experience of ME/CFS and those working in statutory services and the voluntary sector, to share their insight into current problems and how services could be improved. Feedback included that there was variable support available from employers to manage ME/CFS and in some cases, attempts to continue activity led to worsening of symptoms. 

An ME/CFS organisation said:

Employers do not routinely consider how to make the recruitment process more accessible.

Some comments from people with ME/CFS were:

I was very lucky that the occupational health staff in my place of work were extremely helpful and understanding, as was my line manager. I wasn’t put under any pressure to return to work and in fact my manager thought it might be better for me to take some more time off to ensure I was absolutely ready to come back … Occupational health and my manager liaised with me to create a phased return plan.

I know I need to continue to make adjustments at work and at home. Before, I was in denial and that wasn’t helping my work situation.

This comment was from an employer supported by a work project run by an ME/CFS charity:

A return-to-work plan has been put into place with the help of Action for ME, which has been very helpful in that we have not lost a valuable member of staff.

(The ‘Support, Empower, Employ ME’ project was funded for 18 months and run by Action for ME in collaboration with North Bristol NHS Trust.)

The offer from DWP is not condition-specific but focuses on the ability of an individual. Through the network of Jobcentres and collaborating with employers, health systems and partner organisation in local areas, specific programmes and tailored support enables disabled people and people with health conditions, to start, stay and succeed in work.

Impact: how we will know when this interim delivery plan has delivered on support with employment

We will know that people with ME/CFS are receiving more appropriate support to maintain and gain employment when people with ME/CFS have easy access to adjustments and aids in their place of work. Employers are showing flexibility, compassion and understanding of disability and health conditions, including ME/CFS, so that people feel more supported by their employer, including providing information and advice and access to occupational health services.

As appropriate to the stage of their illness, people with ME/CFS are supported to manage their condition, change how they work or leave on grounds of ill health retirement. Carers are supported to enter, maintain or return to employment. 

Best practice

Advice from DWP is that the following behaviours and actions from employers will enable people with ME/CFS to maintain their employment and find new work:

• requests for flexible working are considered fairly and take account of individual needs and strengths alongside employers’ requirements
• reasonable adjustments are offered appropriately in the workplace, including at interview stage, for example:
  • text to speech and speech to text software
  • designated parking
  • ergonomic assessments and reclining workstations
  • low intensity and stimulus environments
  • cognitive aids
  • audiobooks
  • places to rest
  • support via the Access to Work scheme
• human resources and occupational health professionals have access to recent guidance and up-to-date training on ME/CFS

The action that DWP is taking to improve support with employment is shown in chapter 5.

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

6. Next steps

We are incredibly grateful to everyone who has contributed to the development of this interim delivery plan and to the commitments already made, particularly from those living with or supporting people with ME/CFS.

We want to continue to monitor progress and capitalise on opportunities to work together. We plan to do this through a new ME/CFS delivery group. Members will include officials from the relevant government departments and arm’s length bodies, people with personal experience (including unpaid carers), staff working in services, representatives of professional bodies, charities and relevant experts. Officials from devolved governments will be involved as appropriate.

The Research Working Group will continue to meet to implement the rapid research actions set out in chapter 5.

The ME/CFS delivery group will meet every 6 months to agree how to monitor performance, discuss progress with the delivery plan actions, share learning and consider how to address any challenges.

Supporting information

Language use in relation to ME/CFS - a personal perspective

The purpose of this information is to give some insight into the way that some people (for example, family members, friends and professionals) can use language in ways that frustrate or upset people who have ME/CFS. This insight comes from personal experience, gathered by people with personal experience who have participated in the development process for the delivery plan on ME/CFS. The evidence has not been validated by the government but represents a flavour of what we have heard through our meetings and workshops.

The content described in the table below was collected through a small informal survey conducted with members of the ME Research Collaborative Patients Advisory Group and the ME/CFS Alliance. Representatives of Doctors with ME have also contributed. The content is not intended to represent the views of all people with personal experience of ME/CFS nor to represent all views that may be relevant.

We believe that this personal experience evidence provides a helpful foundation for 2 actions proposed in the delivery plan:

• action 4 - as part of the UKCRC 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
• action 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 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

Issues reported on language used in relation to ME/CFS

Issue	Why this is a problem to someone who has ME/CFS	What people say that is distressing or frustrating
Chronic fatigue syndrome - as an alternative description of ME/CFS	Chronic fatigue is only one of the many symptoms that people with ME/CFS experience on a daily basis. The emphasis on this one symptom leads to misconceptions about the condition and how disabling it can be. Many people misunderstand the term ‘chronic fatigue’ as meaning ‘very tired’, but anyone can feel tired, without them being ill. This makes it harder to explain to others what the impact of ME/CFS actually is and why more sleep isn’t an answer. Fatigue is also a common symptom for many chronic illnesses. Emphasising chronic fatigue can lead to other symptoms being ignored.	Just go to bed earlier. I’d love it if I could stay in bed all day. You’re just lazy. Yeah, I’m very tired too. Sounds like a normal life (as a parent). I didn’t think it was a very serious condition. ME/CFS is fatigue or Tired All The Time (TATT). ME/CFS is deconditioning.
Normal experience of illness is that people recover	Some people with ME/CFS have low expectations of full recovery and prefer to minimise the severity of their symptoms or preventing deterioration by managing their life carefully. It can be distressing and frustrating when other people assume that recovery can be expected, when there is very little scientific evidence to show that this is the case.	You’ve just got to get more active. I don’t see why she doesn’t recover. My mum’s friend had that and she recovered. You’ll be fine. You should aim for full recovery. We can get you back to normal with some time and effort. The treatment works well, you have to change your idea of what recovery is.
The misconception that ME/CFS is a mental health condition, ‘all in the mind’ or that you can get better or overcome symptoms by the way you think	The World Health Organization classified ME/CFS as a neurological condition in 1969. Subsequent research and NICE guidance describe ME/CFS as a ‘complex, chronic medical condition affecting multiple body systems’. ME/CFS has never been classified as a mental health condition, but some clinicians choose to treat it that way.	Everyone’s been struggling since the pandemic. Are you sure it’s not health anxiety? Maybe you should ask your doctor to put up your dose of antidepressants. If you thought differently, you would get better. You need to make more of an effort. It helps to have a positive attitude.
The fact that there is no medical test to prove that someone has ME/CFS	As yet, there are no diagnostic tests to show when someone has ME/CFS. This is because there hasn’t been enough research to explain the causes and how to test for the condition. This isn’t the fault of the person with ME/CFS but they can be made to feel that they are lying or seeking unnecessary attention. Alternatively, people can spend a long time being sent to different specialists to rule out other options. Tests in themselves are not bad, and conversely, many patients are not offered tests because clinicians don’t take their symptoms seriously or assume that, if they have ME, there’s no need to look further. The problem is that participating in testing can be exhausting and often delays diagnosis.	The test results came back normal so: - you need to be referred to another specialist - I can’t find anything wrong with you - you are lying - maybe you are depressed about something - good news - the tests say there is nothing wrong with you - you can’t really be sick, because one of these tests would show something
‘Post-exertional malaise’ or PEM is a technical term which most people will not have heard of	PEM is one of the 4 key features of ME/CFS according to the NICE guideline on ME/CFS (NG206). It can be hard to explain. ‘Exertional’ means all activity - physical, cognitive, social, and emotional. The negative effects can be both immediate and/or longer term. The effect can also be delayed after the initial trigger.	You did nothing yesterday, why are you still in bed?
Symptoms of ME/CFS cannot be seen	The invisible nature of ME/CFS means that it can be hard for other people to accept there is anything wrong, particularly in people with mild or moderate symptoms. ME/CFS does not cause obvious visible physical differences. People with ME/CFS who are housebound can become invisible to society as they are rarely, if ever, seen, including by clinicians. With severe ME/CFS, people can be bedbound, tube-fed and only leave their homes in an emergency. The effects of the illness can be visible, but the people with these symptoms are rarely seen.	You look normal. You just don’t want to work. Have you just tried eating better? Is it as bad as you say it is? You don’t need the wheelchair because I saw you walk last week. Of course you can walk, you don’t have a broken leg or anything. No, you can’t have a home visit.
People with mild or moderate ME/CFS can manage their energy to do something out of their ordinary routine, as long as they rest before and afterwards as necessary	Other people may not understand the need to manage or ‘pace’ daily energy supplies. This means that when they see the person with ME/CFS, they do not realise that they are seeing that person at their best. This can lead to misunderstanding and suspicion about whether the person is actually ill. When people with ME/CFS have severe symptoms, they cannot socialise or go out so others do not see the impact of the condition on them.	How can you go for lunch with someone, but you can’t go to work for 8 hours? You shouldn’t be going on holiday if you can’t work full time. You went for a walk yesterday - you don’t need that aid. The tests are only available in the mornings. We need you to commit to attending weekly. The equipment needs to be returned to us the day after the test.

Further evidence about the experience of having ME/CFS

Action for ME, 2020. The Big Survey 2019 (last viewed on 2 May 2023).

Action for ME, 2017. Families facing false accusations: results of Action for ME’s survey. Available to download from Action for ME: support for parents (last viewed 2 May 2023).

Action for ME, 2015. 2015 survey: ‘Close to collapse’. Available to download from Action for ME: support for social care professionals (last viewed on 2 May 2023).

‘Dialogues for a neglected illness’ funded by the Wellcome Public Engagement Fund (2018).

Kingdon, CC, Bowman, EW and others, 2018. ‘Functional status and well-being in people with myalgic encephalomyelitis/chronic fatigue syndrome compared with people with multiple sclerosis and healthy controls’. PharmacoEconomics Open 2, 381–392 (last viewed 3 May 2023).

Tripp C (2022). ‘Understanding ME and chronic fatigue syndrome in children’ (last viewed 5 May 2023).

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