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Privacy Policy

Privacy Policy

At Action for M.E. we will only collect, process and store information about you that you have willingly provided. We aim to be open about collecting this information and clear about what we will use it for. You do not need to give us any information to use our website, although as a result of your use of the website we may collect cookies and other related information.

We will not share your information without your permission unless we are legally permitted or required to do so. There are times when we may be forced to share your information with police, regulatory bodies or legal advisors without your permission (sometimes referred to as ‘breaching confidentiality’). This could be for one of the following reasons:

  • where the user is disclosing information about an act of terrorism;
  • where a court orders Action for M.E. to disclose information;
  • where there is reasonable cause to suspect that an adult’s life may be in immediate danger;
  • where there is reasonable cause to suspect that a child or young person may be experiencing or at risk of experiencing significant harm.

When you give us a donation or sign up to support us in other ways we will ask for your information. We use this information to manage your donation, event, etc. and to record your marketing preferences. We may occasionally share this information if you are taking part in an event etc. that we are running with a partner. We will always try to make this clear when you sign up.

We may also ask you to ‘opt out’ of receiving some communications. By not opting out, you agree to us contacting you occasionally with information about our work or fundraising, by post, phone and email, and to ask for other help in the future. We will never sell or swap your details.

If you change your mind and do not want us to contact you further, or remove your details from our database, you can write to tom@actionforme.org.uk or call 0117 937 6633 and let us know.

We will process your personal data on the basis of your consent and/or our legitimate interests (which include the administration and improvement of our websites, the provision of information about our services and fundraising activities, management of relationships with our volunteers, donors and other supporters and for compliance with applicable laws, rules and regulations).

Sharing your story

Some people choose to tell us about their experiences with M.E. to help further our work. This may include them sharing sensitive information related to their health.
If you choose to give us your consent to do so, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report.

We run services to provide support to individuals affected by M.E. and collect Personal Data in order to provide those services. Depending on the service we may use it to answer your questions and give you advice or guidance. We will also use it for training, quality monitoring or evaluating the services we provide.

Our online forum asks you to provide your full name and email address when you register though we encourage the use of an anonymous username on the forum itself. We may use your email address to contact you about administrative issues and changes to the forum. With your consent, we may also use your email address to send you information about our work. Posts to the forum made by users may contain sensitive information. We advise users to be careful not to post information which would allow them to be identified.


When you visit our website we collect information to help us to understand how supporters use our site, and to make improvements. This information consists of your IP address, your browser (e.g. Internet Explorer), when you visited and which pages you visited or downloaded during your visit. We cannot use this information to find out further personal information about you, and will not share any individual information unless required to do so by law.

Keeping your data safe

We constantly work to make sure that your data is properly protected through encryption, firewalls and monitoring. We make sure that your data is only seen by people who need to view it for their work and that our staff are trained in protecting your information.

Keeping your information up to date

Where possible we keep our records up to date and use public records to do this in some cases. We are more easily able to do this if you let us know when your details change.

Right to access your information

You have the right to see the information we hold about you under Data Protection laws. You also have a right to us to correct, delete, or restrict your personal data. You may ask us to send your information to someone else, or to give you information in a way that makes it easy for you to pass on. You can also object to or withdraw your permission for us to process your information.

If you want to exercise any of these rights, send a description of your request (including the information you want to access, if applicable) and proof of your identity by email to tom@actionforme.org.uk

Right to complain

If you are not happy about the way in which we are processing your personal data, please contact us at tom@actionforme.org.uk. You also have the right to make a complaint to the UK Information Commissioner’s Office.

Data controller

The Action for M.E. (registered charity number 1036419) is the data controller of personal data collected through the website. Our data protection officer is Ian Jess.