Privacy Policy - Easy Read

Our privacy policy

Action for ME collects information to help us deliver the best services we can. This means that we are a controller of information.

This notice tells you:

• What information Action for ME collects that identifies you (your personal data)
• How we use that information
• What your rights are
• Where we process your data

You can also download this image for an alternative easy read option.

What is personal data?

Personal data means information about you, like:

• Your name
• Your email address
• Your health information
• Things that show who you are (like your age or background)

What information we collect

We only collect information you choose to give us data that helps us run our services.

Depending on what you use, we may collect:

• Contact details (name, email)
• Information about your experience of ME
• Health information (if you choose to share it)
• Demographic details (like age, gender, ethnicity)
• Website use data (like pages you visit)

Some of this (like health or ethnicity) is sensitive data. We only use it with your permission.

Why we collect your information

We use your information to:

• Help you use our services
• Answer your questions
• Send newsletters (if you sign up)
• Manage donations or purchases
• Improve what we do
• Support research into ME
• Share stories (with your consent - only if you agree)

Our legal reasons (why we’re allowed to use your data)

We only use your data when the law says we can. This includes:

• Your consent (you said yes)
• Legal obligations (we must by law)
• Legitimate interests (to run our charity properly, without harming your rights)

You can change your mind at any time about giving consent.

How long we keep your data

We only keep your information for as long as we need it.

We decide this based on:

• Legal rules
• Why we collected it
• Guidance from regulators (like the Information Commissioners Office)

You can ask us for more details anytime.

How we use your data (examples)

If you use our services

We use your information to:

• Provide support and advice
• Improve our services

If you donate or support us

We use your data to:

• Manage donations or events
• Record your preferences

If you sign up to newsletters

• We send updates using Brevo (email provider)
• You can unsubscribe anytime (there’s always a link)

If you share your story

• We only use it with your permission
• It might be shared publicly (e.g. campaigns, reports)

If you use our website

We collect basic information like:

• Your IP address
• Browsing behaviour

This helps us improve the site.
We don’t identify you personally from this.

If you use our forum

• You register with your name and email
• We ask you to choose an anonymous username

Be careful not to post personal or sensitive details publicly.

PRIME Research Involvement Hub

If you join:

• We collect information to match you with research opportunities
• This may include health information

We use tools like:

• Airtable
• Zapier
• Zite
• Sender

These companies process data for us safely and legally.

Who we share your data with

We may share your data with:

• Service providers (e.g. email, printing, IT systems)
• Researchers (if you join research programmes)
• Legal authorities (if required by law)

We never sell your information.

Keeping your data safe

We protect your data using:

• Encryption
• Firewalls
• Secure systems

Only trained staff can access your information.

Information for children and young people

If you are under 18:

• You can still use our services
• Be careful what you share online
• Ask a trusted adult if you are unsure

We always try to explain things clearly and keep you safe.

Your rights (what you can ask us to do)

You have the right to:

• See your data
• Correct mistakes
• Ask us to delete it
• Limit how we use it
• Move it somewhere else
• Object to how we use it

To do this, contact us (see below).

How to contact us

Email: infosupport@actionforme.org.uk
Phone: 0117 927 9551
Post:
Action for ME
Unit 2.2 Streamline
436–441 Paintworks
Bristol, BS4 3AS

Our Data Protection Officer/Lead is the Chief Executive.

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Complaints

If you are unhappy:

1. Contact us first
2. You can also contact the Information Commissioner’s Office (ICO)

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Changes to this policy

We review this policy regularly.

Last updated: 29 June 2026

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