My full reality: the interim delivery plan on ME/CFS is a great opportunity for the ME community to make our voices heard. Reading the interim plan and completing the survey is a big committment for #pwME so we have put together a document with advice on how to save your answers, a list of FAQs from the DHSC and a preview of the survey questions.

• Easy Read version
• Saving
• Community call slides
• Challenging the introduction
• FAQs from DHSC
• Question preview

Easy read version
An easy read version of the DHSC plan can be found here

Saving
We have been getting a few questions asking about the draft DHSC delivery plan and if it is possible to add a “save” feature so that consultation responses can be completed in multiple stages. We can thankfully report that this feature is already a part of the process.

If you navigate away from the survey, it should continue from where you left it, if you reopen the link in the same browser with the link from where you left it.

Just a reminder that the survey will be available online at the following link and will run for a period of 8 weeks from 9 August 2023 to 4 October 2023. It doesn’t need to be completed straight away or all at once. Please #StopRestPace. https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan

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Community call slides
To download the slides from our community call as a PDF please click here.

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How to challenge language used in the Introduction
The DHSC have replied to our question about how to challenge the language in the Introduction to the Interim Delivery Plan on ME, where there are particular issues with the reference to ‘functional disease’ or ‘medically unexplained symptoms’ as being ‘medically accurate’ descriptions of ME. They say, ‘The references you mention are part of the case for change, in relation to attitudes and education of professionals. There is a specific section within the consultation where we invite comments on the Attitudes and Education chapter of the Interim Delivery Plan. We would suggest that would be an appropriate place to provide any comments on that particular language.’

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Here are the FAQs from the DHSC.

Why are we carrying out the survey?
The Government wants to understand how we can improve the lives of people living with ME/CFS. We are running this survey to seek the views of the ME/CFS community including patients, families and carers, healthcare and other professionals, clinical academics and researchers.

Who is the survey for?
We are seeking input from the ME/CFS community including patients, families and carers, healthcare and other professionals, clinical academics and researchers. You must be over 13 years old to take part in the survey. If you are under 13, you can ask a family member or carer to fill in the survey for you.

Are there different survey links for different groups (e.g. patients, healthcare professionals etc.)?
No, everyone filling out the survey uses the same link. You will be asked which group you belong to as part of the survey.

What will I be asked?
You will be asked a little bit about your background as a member of the ME/CFS community and to give views on the proposed actions set out in the Interim Delivery Plan.

If I fill out the survey, what happens to my data?
Survey responses submitted are collected by the Department of Health and Social Care and will be viewed by policy officials at the Department.
Survey responses will be used exclusively for the production of an updated Delivery Plan and related policy work by relevant policy teams in Scotland, Wales and Northern Ireland to inform their future policies. We will not share any personal data (if you have provided any). Where we have received a response to the survey from an organisation, we will provide the name of the organisation that has provided the response.

Responses will not be shared with any third parties. Data will be collected in accordance with the General Data Protection Regulation (GDPR) and Data Protection Act 2018, which legislate to protect your personal information. Responses to this survey are anonymous unless you choose to share personal details such as name and email address in the final part of the survey.
You can find the Department for Health and Social Care’s privacy notice on the consultation page.

How long will the survey be running?
The survey will run for 8 weeks from 9 August 2023 to 4 October 2023.

How long will the survey take?
The survey will take approximately 20-30 minutes to complete, depending on how many questions you answer.

If I am a healthcare professional/researcher/carer/family member/industry professional and also have ME/CFS myself, can I complete the survey twice?
Yes, if you suffer from ME/CFS and are also involved in ME/CFS research, healthcare or support or if you also have family member with ME/CFS please feel free to complete the survey twice from both perspectives.

If I work for a company/organisation and would like to respond to the survey, do you want a response from me as an individual or on behalf of my whole organisation?
We welcome responses from both individuals who work with ME/CFS and organisational level responses. If you are responding to the survey on behalf of a company or organisation, please indicate this when prompted.

I have symptoms of ME/CFS but don’t yet have a diagnosis, so can I complete the survey?
Yes. We are interested in the views of everyone who has an interest in ME/CFS.

Can someone help me to complete the survey or complete it on my behalf?
Yes. If someone is completing the survey on your behalf, they must have your consent to do so. They can show that they are completing it on behalf of someone else.

I’m under 16 – can I do the survey myself?
Yes, as long as you are 13 years or older.

I used to have ME/CFS but am recovered now. Can I still give my views ?
Yes. We are still interested in your experience and your views on the draft plan.

I used to care for someone with ME/CFS but I don’t any more. Can I still give my views?
Yes. We are still interested in your experience as an unpaid carer and your views on the draft plan.

There is more than one person in my household who has ME/CFS. Can we all complete a survey on-line using the same computer?
Yes. Just make sure that one person submits their survey before the next person starts it.

Do I have to complete the whole survey?
No. You can complete as many questions as you wish, skipping those that you do not want to answer.

Do I have to read the whole of the Interim Delivery Plan, to be able to respond to the survey?
No. The survey asks for your views on the following chapters – Research, Attitudes & Education, Living with ME/CFS, Actions and the use of language in ME/CFS. You could just read one or some of those chapters and only answer the relevant questions.

Can I complete the survey in stages, over a period of time?
Yes. You can save your progress and return to it another time, providing you use the same browser and device each time.

Can I change my response after I have submitted the survey, if I change my mind?
Yes, if you have given us your email address when you submitted the survey and as long as the survey hasn’t closed. We will use your email address to find your survey response.

I find it difficult to use a computer. Can I complete the survey in another way ?
Yes. You can print a copy of the survey and return it to us, or we can post you a paper copy to complete instead. Please email us to request a paper copy or ask someone to do this for you, at: [email protected]

Please include your name and address in the email. This will not shared with anyone outside of the consultation team.

When does the survey close?
The survey is open for 8 weeks. It will close at 11.59pm on 4 October 2023. If you are posting it back to us, please post it to us before this date. Responses received after this date will not be considered.

What will happen to my response once I submit it?
Once the survey has closed, all the responses will be collated, read and analysed by government officials. Every response will help us to develop an updated version of the Delivery Plan. If you use services or work in Wales, Scotland or Northern Ireland, your response will be shared with officials from that nation’s government / executive so that they can consider your views in relation to local policy.

What will happen to my personal information?
Our survey provider will erase all data submitted through the online survey within 1 year of the survey closing.

DHSC may retain anonymised response data for research and FOI purposes for no longer than 5 years, reviewed after 2 years.

Postal survey responses will be destroyed after they have been scanned to create a digital copy.

When will the results of this survey be published?
Once the survey is closed, we will consider the responses and update on next steps in due course.

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You can preview the questions here which can be answered after reading the appropriate chapters:

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

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)