Closed consultation

Consultation document: the interim delivery plan on ME/CFS

Updated 4 September 2023

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Executive summary

This consultation seeks views on an interim set of actions to improve the experiences and outcomes of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that have been developed in collaboration with people living with, working or interested in the condition. It will inform the development of a final cross-government delivery plan on ME/CFS.

The consultation will run for a period of 8 weeks and is open to everyone aged 13 and over. You can respond as an individual or on behalf of an organisation.

‘My full reality: the interim delivery plan on ME/CFS’ is available on the consultation page.

The easiest way to participate in the consultation is to complete the online survey.

The consultation closes at 11.59pm on 4 October 2023.

My full reality: interim delivery plan on ME/CFS

ME/CFS is a long-term health condition which remains poorly understood, despite affecting an estimated 241,000 children and adults in England.

It is a complex, multisystem, 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. 

ME/CFS can be characterised by: 

• 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. This can last for months or years. In rare cases, the outcome has been fatal.

The government is committed to supporting all people living with ME/CFS. On 12 May 2022 the government announced an intention to develop an ME/CFS delivery plan to improve the experiences and outcomes for people with the condition. The Department of Health and Social Care (DHSC) has led cross-government work to develop this interim delivery plan.

Scope of the consultation

We know that people living with ME/CFS need support from a range of services.

We are now inviting stakeholders across the UK - including people living ME/CFS, their families and carers, healthcare professionals and researchers - to put forward their views on a set of actions on research, attitudes and education, and living with ME/CFS, as well as about language used in ME/CFS.

Your responses to this survey will used to build a picture of how well the interim delivery plan identifies and addresses the issues most important to the community of people interested in ME/CFS, and help us to understand where we need to go further.  

Questions

Chapters 2, 3 and 4 of the plan set out the key problems to be addressed, some proposed descriptions of the future vision to be achieved and best practice principles for everyone to be aware of. Chapter 5 lists the agreed actions setting out what will happen to address the problems identified.

Research

The plan concludes that the research community has a low capacity and capability to respond to ME/CFS research needs, and that awareness of those research needs is low. The level of biomedical research on ME/CFS that has been funded is also low.

The government is keen to build on the work already done by the National Institute for Health and Care Research and Medical Research Council, such as the DecodeME study, and the James Lind Alliance Priority Setting Partnership’s Top 10+ research priorities.

The plan sets out proposed commitments to action in 3 areas: research strategy, capacity and capability in the research community and building awareness and trust between stakeholders.

Questions

To what extent do you agree or disagree with the contents of this chapter?

• strongly agree
• agree
• disagree
• strongly disagree

What, if anything, do you think could be improved about this chapter? (select all that apply)

• some content is missing
• some content does not reflect my experience
• some content could be simpler or clearer
• some content could be more detailed

Do you have further comments? (250 words maximum)

Attitudes and education

We have heard that many children and adults with ME/CFS feel they have not been believed, supported or treated equally across all settings and professional groups. There is limited evidence as to what the attitudes towards ME/CFS are among professionals currently. Some people with ME/CFS have had positive experiences with professionals but other people with personal experience do not feel that professionals always fully acknowledge or understand the impact of ME/CFS on their daily life.

There are limited education and training opportunities for any professional groups on ME/CFS. Professional awareness of the updated NICE guideline on ME/CFS (NG206) could be improved. We aim to make progress to improve education and training opportunities, to increase awareness and understanding of ME/CFS and its impacts among professionals and for people with ME/CFS, their families and carers to feel listened to, supported and treated fairly.

Questions

To what extent do you agree or disagree with the contents of this chapter?

• strongly agree
• agree
• disagree
• strongly disagree

What, if anything, do you think could be improved about this chapter? (select all that apply)

• some content is missing
• some content does not reflect my experience
• some content could be simpler or clearer
• some content could be more detailed

Do you have further comments? (250 words maximum)

Living with ME/CFS

Quality of life

We have heard that quality of life is often significantly reduced for adults and children with ME/CFS, and for their families and other unpaid carers who support them. We aim to raise more awareness of ME/CFS and its impacts on daily life for those with the condition as well as their families and carers.

Support for children and young people with ME/CFS

We have heard that children and young people with ME/CFS can struggle to get the right support to help them succeed in education and training and that they and their families may face safeguarding referrals to children’s social care departments.

This section of the plan sets out what arrangements should be in place to meet needs through adaptations or alternative education provision for children and young people who are not able to attend school. We aim to ensure that support for the education of children and young people with ME/CFS is effective and that social care involvement is appropriate and meets best practice standards.

Health services for people with ME/CFS

We have heard that people with ME/CFS can struggle to get adequate investigation and correct diagnosis, appropriate management support, advice, supportive treatment and review. Existing services vary in what they can offer and their approach to ME/CFS. People with more severe forms of ME/CFS can struggle to access health services both for their ME/CFS and for other health concerns. Many ME/CFS services can find it difficult to recruit and retain appropriately trained staff.

We aim to make progress on raising awareness and understanding of how to support people with ME/CFS to access appropriate advice and support, diagnosis and specialist services where necessary, as well as general health services for health needs not related to ME/CFS.

Adult social care

We have heard that that adults with ME/CFS and their unpaid carers can struggle to access informed and appropriate social care support. We aim to raise awareness of the support that adult social care services provide to eligible people and how to access it, including access to advocacy support and personalised care planning. We will support adult social care staff to have sufficient knowledge of ME/CFS to enable them to adopt a person-centred approach when assessing needs and supporting individuals.

Welfare support

We have heard that children and adults with ME/CFS and their unpaid carers can struggle to access benefits and find the process difficult to navigate. In this section, the Department for Work and Pensions (DWP) set out its priorities for the future which includes improving the experience of the welfare system for people with disabilities and/or health conditions. DWP wants to make its services easier to access, their processes simpler and carry out improvements to increase people’s trust in the system.

Employment

We have heard that inclusive and flexible job opportunities (paid or unpaid) are limited for people with ME/CFS, recruitment processes are often not easily accessible and that access to informed and appropriate human resources (HR) support, including occupational health, varies in the workplace.

On 15 March 2023, the Department for Work and Pensions (DWP) published Transforming support: the health and disability white paper, which sets out its vision to help more disabled people and people with health conditions to start, stay and succeed in work. The impact of this vision is described in the employment section of the interim delivery plan.

Questions

The survey will ask you the following questions for each of the 6 sections of the ‘Living with ME/CFS’ chapter:

• quality of life
• support for children and young people with ME/CFS
• health services for people with ME/CFS
• adult social care
• welfare support
• employment

To what extent do you agree or disagree with the contents of this chapter?

• strongly agree
• agree
• disagree
• strongly disagree

What, if anything, do you think could be improved about this chapter? (select all that apply)

• some content is missing
• some content does not reflect my experience
• some content could be simpler or clearer
• some content could be more detailed

Do you have further comments? (250 words maximum)

Agreed actions

Research

Question

To what extent do you agree or disagree with the actions for improving research?

• strongly agree
• agree
• disagree
• strongly disagree

Do you have further comments? (250 words maximum)

Attitudes and education

Question

To what extent do you agree or disagree with the actions for improving attitudes and education?

• strongly agree
• agree
• disagree
• strongly disagree

Do you have further comments? (250 words maximum)

Awareness and understanding

Question

To what extent do you agree or disagree with the actions for improving awareness and understanding?

• strongly agree
• agree
• disagree
• strongly disagree

Do you have further comments? (250 words maximum)

Statutory support

Question

To what extent do you agree or disagree with the actions for improving statutory support?

• strongly agree
• agree
• disagree
• strongly disagree

Do you have further comments? (250 words maximum)

Language use in relation to ME/CFS

This part of the survey should only be completed by respondents with personal experience of living with ME/CFS.

The supporting information to the plan aims to give an 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 personal experience was gathered by people with personal experience who took part in the development process for the plan on ME/CFS. This part of the survey asks you to tell us if this reflects your experience as a person with ME/CFS (past or present) and what you feel would be more appropriate language for others to use, when speaking to someone who has ME/CFS.

Chronic fatigue as a symptom of ME/CFS

Comments you may have heard:

• “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)”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

Recovery from ME/CFS

Comments you may have heard:

• “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.”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

Misconceptions that ME/CFS is a mental health condition, or how you think can impact your symptoms

Comments you may have heard:

• “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.”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

Lack of medical test to prove a diagnosis of ME/CFS

Comments you may have heard:

• “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.”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

The lack of obvious signs that someone has ME/CFS

Comments you may have heard:

• “You look normal”.

• “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.”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

Using pacing to manage energy

Comments you may have heard:

• “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 equipment needs to be returned to us the day after the test.”

Question

Have these or similar comments been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

Difficulty explaining or understanding post exertional malaise

A comment you may have heard is:

“You did nothing yesterday, why are you still in bed?

Question

Has this or a similar comment been made to you?

• yes
• no

What do you suggest would be more appropriate language to use? (maximum 30 words)

How to respond

The easiest way to participate in the consultation is by completing the online survey.

Alternatively, you can print out the survey document (PDF, 194KB) and return the completed survey by post to:

ME/CFS interim delivery plan
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU

If you have any problems with using the online survey or PDF, or require an alternative format, please email mecfs@dhsc.gov.uk. Do not send your consultation responses or any personal information to this email address.

Next steps

The views and experiences gathered through this consultation will used to build a picture of how well the interim delivery plan identifies and addresses the issues most important to the community of people interested in ME/CFS, and help us to understand where we need to go further. We will publish the final delivery plan later this year.

Privacy notice

Over the course of August to October 2023, DHSC will seek the views of individuals and organisations on the cross-government interim delivery plan for ME/CFS, using a survey. This privacy notice sets out how data collected through this survey will be used and respondents’ rights under articles 13 and/or 14 of the General Data Protection Regulation (GDPR).

Data controller

The Department of Health and Social Care (DHSC) is the data controller. 

What personal data we collect

You can respond via the survey which can be completed online, or on paper and submitted by email.

We will collect data on:

• whether you are responding as an individual or on behalf of an organisation
• if responding online, your internet protocol (IP) address (this is for security purposes and will not be attached to your survey response)
• where in the UK that you live, work or provide services
• if responding on behalf of an organisation, the name of your organisation
• if responding as a professional, the area or profession in which you work
• if you have ME/CFS, the severity of your symptoms and how long you have had the condition
• if you are an unpaid carer, questions regarding the age of the person you care for or support, how severe their symptoms are and how long you have been caring for or supporting them
• your personal characteristics (including your age range, sex, gender identity and ethnicity)
• your email address, if completing a paper survey and submitting it by email, or if confirming DHSC can contact you about your response

If volunteered by you, we will also collect data on any other personal data you volunteer by way of evidence or example in your response to the free-text questions in the survey, although we request that you do not include personal data about yourself or any other person in your response.

If you have been given consent to complete the survey on behalf of someone else, we will collect their personal data rather than yours, with the exception of your IP address. In this context, the rest of this privacy notice refers to the person whose views and personal data inform the survey.

How we use your data (purposes)

Your data will be treated in the strictest confidence.

We collect your personal data as part of the survey process:

• for statistical purposes, for example, to understand how representative the results are and whether views and experiences vary across demographics
• so that DHSC can contact you for further information about your response (if you have given your consent)

Legal basis for processing personal data

Under the Article 6 of the UK General Data Protection Regulation (GDPR), the lawful basis we rely on for processing this information is:

(e) Necessary task in the public interest or controller’s official authority

Under Article 9 conditions for processing special category data, the lawful bases we rely on for processing this information are:

• 9(h) health or social care (with a basis in law)
• 9(j) archiving, research and statistics (with a basis in law)

Data processors and other recipients of personal data

All anonymous responses to the survey will be seen by DHSC’s third party supplier (SurveyOptic), which is responsible for running and hosting the online survey.

Responses to the sections of the survey about children and young people, health services and adult social care services will be extracted from the data where the respondents use services in Scotland, Northern Ireland and Wales and the remaining data will be seen by professional analysts and policy leads working on the interim delivery plan on ME/CFS (or overlapping areas) in DHSC.

All anonymous responses to the survey by people who use Scottish services will be seen by professional analysts and policy leads working on the interim delivery plan on ME/CFS (or overlapping areas) in the Scottish Government.

All anonymous responses to the survey by people who use Northern Ireland services will be seen by professional analysts and policy leads working on the interim delivery plan on ME/CFS (or overlapping areas) in the Northern Ireland Executive.

All anonymous responses to the survey by people who use Welsh services will be seen by professional analysts and policy leads working on the interim delivery plan on ME/CFS (or overlapping areas) in the Welsh Government.

DHSC may also share anonymised responses with:

• individuals supporting this project within DHSC’s executive agencies and executive non-departmental public bodies, such as NHS England
• other government departments, such as the Department for Education and Department for Work and Pensions

International data transfers and storage locations

Storage of data by DHSC is provided via secure computing infrastructure on servers located in the European Economic Area (EEA). Our platforms are subject to extensive security protections and encryption measures.

Storage of data by SurveyOptic is provided via secure servers located in the UK.

Retention and disposal policy

Postal survey responses will be destroyed after they have been scanned to create a digital copy. Names and contact information submitted through the online survey will be separated from the response data and retained for a maximum of one year.

All other data will be retained for research and Freedom of Information (FOI) purposes for no longer than 5 years and reviewed after 2 years.

SurveyOptic will securely erase all data submitted through their platform within one year of the survey closing.

How we keep your data secure

DHSC uses appropriate technical, organisational and administrative security measures to protect any information we hold in our records from loss, misuse, unauthorised access, disclosure, alteration and destruction. We have written procedures and policies which are regularly audited and reviewed at a senior level.

SurveyOptic is Cyber Essentials certified.

Your rights as a data subject

By law, data subjects have a number of rights and this processing does not take away or reduce these rights under the EU General Data Protection Regulation (2016/679) and the UK Data Protection Act 2018 applies.

These rights are:

• the right to get copies of information - individuals have the right to ask for a copy of any information about them that is used
• the right to get information corrected - individuals have the right to ask for any information held about them that they think is inaccurate, to be corrected
• the right to limit how the information is used - individuals have the right to ask for any of the information held about them to be restricted, for example, if they think inaccurate information is being used
• the right to object to the information being used - individuals can ask for any information held about them to not be used. However, this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case
• the right to get information deleted - this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case

Comments or complaints

Anyone unhappy or wishing to complain about how personal data is used as part of this programme, should contact data_protection@dhsc.gov.uk in the first instance or write to:

Data Protection Officer
1st Floor North
39 Victoria Street
London
SW1H 0EU

Anyone who is still not satisfied can complain to the Information Commissioners Office. Their website address is www.ico.org.uk and their postal address is:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Automated decision making or profiling

No decision will be made about individuals solely based on automated decision making (where a decision is taken about them using an electronic system without human involvement) which has a significant impact on them.

Changes to this policy

This privacy notice is kept under regular review, and new versions will be available on our privacy notice page on our website. This privacy notice was last updated on 9 August 2023.