ME Association Information Survey

We are conducting this survey to ensure the information we provide is useful, accurate, and accessible to the people who need it.

Your feedback will help us understand which ME Association information and services you are aware of, use, and value most, and how easy they are to find and use. The survey covers our Free Literature, Medical Matters, Website posts/blogs, Newsletter and Social Media.

The MEA has considered many options to make the literature more accessible (including audio & easy read options) and plans to make our Free Literature into web pages with downloadable PDFs has been agreed and this in currently in progress.

So we hope the responses from this will help us to improve the information we provide and how we communicate with you, our community. We are particularly keen to learn how accessible our information is and where it can be improved, and we greatly appreciate you taking the time to share your views.

Thank you for your feedback in advance.

Information Survey

Please enable JavaScript in your browser to complete this form.

This survey will begin by asking you several questions about which areas of our services you have used and are aware of. Then, depending on which areas you say you use, we will ask you follow up questions about each of these.

There are 8-12 questions in each section. If you complete all questions in the survey, it is expected to take 15-20 minutes.

Please remember that the majority of questions in this survey are optional – you can skip any which you do not wish to complete.

You can also pause the survey at any time by clicking the ‘Save and Resume Later' button at the bottom of the screen. This will save a copy of your partially complete survey, and email you a link to resume the survey within 30 days (or before the closing date, 31st July 2026)

Q1: Which of the following are you aware that the ME Association offers? Select all that apply

• Free downloadable information booklets (Free Literature)
• Medical Matters (Q&A style information from Dr Charles Shepherd, MEA Hon. Medical Adviser, and other MEA advisers)
• Website posts/blogs sharing regular news updates
• Weekly e-newsletter
• Social media channels sharing news, information, services and fundraising content
• None of the above

Q2: Have you ever used/read or subscribed to the following from the ME Association? Select all that apply *

• Free downloadable information booklets (Free Literature)
• Medical Matters (Q&A style information from Dr Charles Shepherd, MEA Hon. Medical Adviser, and other MEA advisers)
• Website posts/blogs sharing regular news updates
• Weekly email newsletter
• Social media channels sharing news, information, services and fundraising content
• None of the above

The questions which we show you later will depend on which answers you select here.

Q3: Which of the following services/website sections are you aware the ME Association has?

• Biomedical Research via the via the Ramsay Research Fund and healthcare research
• ME Connect, our helpline and email messaging service
• ME Connected, our Discord online community
• Membership
• Healthcare 4 ME (Health and Social Care team who work with the NHS and social care providers to improve healthcare for people with ME/CFS and Long Covid)
• Information for healthcare professionals (Part of Healthcare 4 ME)
• Directory of independently run local support groups
• Website shop
• None of the above

Q4: Do you find it easy to navigate the website and find what you are looking for?

• Yes
• No
• I don't use the website

Please feel free to provide any further comments below

Comments

Free Literature: If you didn’t know that we offer Free Literature, how would you prefer us to communicate to you about this?

• Social Media
• Newsletter
• Website Posts/Blogs
• Other (please specify below)

Other (please specify)

Find out more about our Free Literature here.

Medical Matters: If you didn’t know that we offer Medical Matters, (Q&A style information from Dr Charles Shepherd, MEA Hon. Medical Adviser, and other MEA advisers), how would you prefer us to communicate to you about this?

• Social Media
• Newsletter
• Blog
• Website
• Other (please specify below)

Find out more about Medical Matters here.

If have Medical

Other (please specify)

Free Literature:

This section contains 11 questions. You are seeing these questions because you stated that you had previously used our Free Literature library.

Please remember that you can pause the survey or skip any questions you do not want to answer or that are not relevant to you, as all questions in this section are optional.

Find out more about our Free Literature here.

Free Literature Q1: Where did you first find out about our Free Literature?

• MEA Website
• Social Media
• Search engine (ie, Google, Bing, etc)
• Magazine
• Newsletter
• AI Search (ie ChatGPT)
• I don't remember
• Other (Please specify below)

Other (please specify)

Free Literature Q2: Have you ever downloaded a booklet from our Free Literature?

• Yes
• No
• Unsure

Free Literature Q3: Do you find the free literature easy to navigate and find what you’re looking for?

• 1
• 2
• 3
• 4
• 5

(1=Very Difficult, 5=Very Easy)

Free Literature Q4: Do you find the information in the Free Literature booklets published in the last 2 years to be up to date and correct? We are aware that older booklets may contain out of date information and are in a continuous process of reviewing and updating.

• 1
• 2
• 3
• 4
• 5

(1=Not up to date and correct, 5=Very up to date and correct)

Free Literature Q5: Have you found the Free Literature helpful?

• 1
• 2
• 3
• 4
• 5

(1=Not helpful, 5=Very helpful)

Free Literature Q6: Do you find the current format accessible? (downloadable PDF)

• 1
• 2
• 3
• 4
• 5

(1=Not accessible to me, 5=Very accessible to me)

Free Literature Q7: Which formats would you find it helpful for the free literature to be available in?

• Audio
• Video
• Web page
• Downloadable PDF
• Easy reader format
• Other (please specify below)

Other (please specify)

Free Literature Q8: Is there anything else we could do which would make our Free Literature more accessible to you?

Free Literature Q9: Are there any topics you would like us to cover that we don’t currently?

Free Literature Q10: Do you use the Free Literature as a primary, trusted source of information?

• Yes
• No
• Sometimes

Free Literature Q11: Do you have any other comments on the Free Literature?

Medical Matters:

This section contains 8 core questions. You are seeing these questions because you stated that you had previously used our Medical Matters database.

Please remember that you can pause the survey or skip any questions you do not want to answer or that are not relevant to you, as all questions in this section are optional.

Find out more about Medical Matters here.

Medical Matters Question 1: Where did you first find out about our Medical Matters database?

• MEA Website
• Social Media
• Search engine (ie, Google, Bing, etc)
• Magazine
• Newsletter
• AI Search (ie ChatGPT)
• I don't remember
• Other (Please specify below)

Other (please specify)

Medical Matters Question 2: Do you find the information in Medical Matters is up to date and correct?

• 1
• 2
• 3
• 4
• 5

1=Not up to date or correct, 5=Very up to date and correct

Medical Matters Question 3: Have you found the information provided in Medical Matters helpful?

• 1
• 2
• 3
• 4
• 5

(1=Not helpful at all, 5=Very helpful)

Medical Matters Question 4: Do you find it easy to find what you’re looking for in the database?

• 1
• 2
• 3
• 4
• 5

1=Very difficult, 5=Very easy

Medical Matters Question 5: How accessible do you find the current format? (web page)

• 1
• 2
• 3
• 4
• 5

1=Not accessible at all, 5=Very accessible

Medical Matters Question 6: Are there any other formats you would prefer to use or find more accessible for Medical Matters?

• Audio
• Video
• Downloadable PDF
• Easy reader format
• Other (please specify below)

Other (please specify)

Medical Matters Question 7: Do you use Medical Matters as a primary, trusted source of information?

• Yes
• No
• Sometimes

Medical Matters Question 8: Do you have any other comments?

Website Posts/Blogs:

This section contains 9 questions. You are seeing these questions because you stated that you had previously read our website blog.

Please remember that you can pause the survey or skip any questions you do not want to answer or that are not relevant to you, as all questions in this section are optional.

Read the blog here.

Website Blogs Q1: Where did you first find out about the MEA website posts/blogs?

• MEA Website
• Social Media
• Search engine (ie, Google, Bing, etc)
• Magazine
• Newsletter
• AI Search (ie ChatGPT)
• I don't remember
• Other (Please specify below)

Other (please specify)

Website Blogs Q2: Do you regularly read website posts/blogs?

• Yes
• No
• Sometimes

Website Blogs Q3: Do you find the information on the website blog relevant and useful?

• 1
• 2
• 3
• 4
• 5

1=Not relevant or useful, 5=Relevant and useful

Website Blogs Q4: Do you find the blogs easy to understand?

• 1
• 2
• 3
• 4
• 5

1=Very difficult to understand, 5=Easy to understand

Website Blogs Q5: Do you use the embedded audio function to read the post/blog text aloud?

• Yes
• No
• Unaware of this function

Website Blogs: Do you find this audio function helpful?

• Yes
• No
• Other (please specify)

Other (please specify)

Website Blogs Q6: Do you find the format and font size easy to read on your chosen device?

• Yes
• No
• Other (please specify)

Other (please specify)

Website Blogs Q7: When we share research blogs, do you find it helpful for us to include an AI generated summary at the top?

• 1
• 2
• 3
• 4
• 5

1=Not helpful, 5=Very helpful

Website Blogs Q8: Are there any topics you would like us to cover further on the blog? OR Are there any topics you would like us to cover less, or that you find less relevant/ useful?

Website Blogs Q9: Do you have any other comments?

E-Newsletter:

This section contains 10 questions for those who are currently subscribed to the E-Newsletter, and fewer for those who aren't. You are seeing these questions because you stated that you have used our E-Newsletter.

Please remember that you can pause the survey or skip questions you do not want to answer or that are not relevant to you, as most questions in this section are optional.

Find out more about the E-Newsletter here.

E-Newsletter Q1: Where did you first find out about the weekly newsletter?

• MEA Website
• Social Media
• Search engine (ie, Google, Bing, etc)
• Magazine
• AI Search (ie ChatGPT)
• I don't remember
• Other (Please specify below)

Other (please specify)

E-Newsletter Q2: Are you currently subscribed to the newsletter? *

• Yes
• No, but I have previously been subscribed to the newsletter
• No, I have never been subscribed to the newsletter

E-Newsletter Q3: If you were previously subscribed, it there a reason why you unsubscribed? OR If you have never subscribed, is there a reason why you haven’t?

E-Newsletter Q3: How long have you been subscribed to the newsletter?

• 0 – 6 months
• 6 months – 1 year
• 1 – 2 years
• 2 – 5 years
• 5+ years
• Not sure
• Other (Please specify below)

Other (please specify)

E-Newsletter Q4: Do you find the information in the newsletter relevant and useful?

• 1
• 2
• 3
• 4
• 5

1=Not relevant or useful, 5=Very relevant and useful

E-Newsletter Q5: Do you find newsletter easy to understand?

• 1
• 2
• 3
• 4
• 5

1=Very hard to understand, 5=Very easy to understand

E-Newsletter Q6: Do you find the newsletter format accessible?

• 1
• 2
• 3
• 4
• 5

1=Not accessible at all, 5=Very accessible

E-Newsletter Q7: Is there anything we could do to make the newsletter more accessible for you?

E-Newsletter Q8: Are there any topics you would like us to cover further in the newsletter?

E-Newsletter Q9: Are there any parts of the newsletter you don’t find useful?

E-Newsletter Q10: Do you have any other comments?

Social Media:

This section contains 9 questions for those who currently follow our content on social media, and fewer for those who don't. You are seeing these questions because you stated that you had previously seen our Social Media posts.

Please remember that you can pause the survey or skip questions you do not want to answer or that are not relevant to you, as most questions in this section are optional.

Find our social media here.

Social Media Q1: Do you currently follow us on social media?*

• Yes
• No
• Unsure

Social Media Q2: If you no longer follow us on Social Media, is there any particular reason why? OR If you have never followed us on social media, is there any particular reason why?

Social Media Q2: Which social media platforms do you follow our content on?

• Facebook
• Instagram
• X/Twitter
• Threads
• Bluesky
• LinkedIn
• YouTube
• All of the above

Social Media Q3: Which kinds of content do you value seeing from us on social media?

• News stories
• Information posts
• Charity updates
• Awareness posts
• Fundraising stories
• Research announcements and updates
• Fundraising initiatives
• Other (please specify below)

Other (Please specify)

Social Media Q4: Do you find the content we share to be relevant and useful?

• 1
• 2
• 3
• 4
• 5

1=Not relevant or useful, 5=Very relevant and useful

Social Media Q5: Do you find posts easy to understand and accessible?

• 1
• 2
• 3
• 4
• 5

1=Very hard to understand, 5=Easy to understand

Social Media Q6: Is there anything we can do to make the posts more accessible to you?

Social Media Q7: Which kinds of content do you prefer to engage with?

• Video (Long & short form videos)
• Graphics
• Audio
• Other (please specify below)

Other (Please specify)

Social Media Q8: Are there any topics you would like us to cover further on social media?

Social Media Q9: Do you have any other comments?

Do you have any further comments you would like to add regarding the information the ME Association shares?

GDPR Agreement *

• I consent to having this website store my submitted information so they can respond to my inquiry.

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