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Privacy Policy

Privacy Policy

This privacy policy sets out how Action for M.E. uses and protects any information that you give Action for M.E.

Action for M.E. is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website, it will only be used in accordance with this privacy statement.

Action for M.E. may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. This policy is effective from September 2016.

If you have any questions, comments or suggestions, please contact us.

What we collect

We may collect the following information:

When you give us a donation or sign up to support us in other ways we will ask for your information. The type and quantity of information we collect and how we use it depends on why you are providing it. We will usually collect your name, contact details and any financial details you provide to process a donation.

Where it is appropriate, we may ask for your motivation for giving, including whether this relates to your personal experience of M.E. This is never mandatory, and you never need to answer this question if you do not wish to.

We will mainly use your data to:

  • Provide you with the services, products or information you asked for
  • Administer your donation or support your fundraising, including processing gift aid
  • Keep a record of your relationship with us
  • Manage your marketing preferences and for fundraising purposes
  • Understand how we can improve our services, products or information.

We may analyse your personal information to create a profile of your interests and preferences so that we can contact you with information relevant to you. We may make use of additional information about you when it is available from external sources to help us do this effectively. We share personal information only with organisations acting on our explicit instruction. We may also use your personal information to detect and reduce fraud and credit risk.

We may contact you to let you know about the work we are undertaking and to ask for financial and non-financial support.

We may send promotional emails about new products, special offers or other information which we think you may find interesting using the email address which you have provided.

From time to time, we may also use your information to contact you for market research purposes. We may contact you by email, phone, fax or mail. We may use the information to customise the website according to your interests. We may also collect and retain your information if you send feedback about our services or make a complaint.

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.


We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.

Controlling your personal information

You may choose to restrict the collection or use of your personal information in the following ways:

Our forms have clear marketing preference questions and we include information on how to opt out when we send you marketing; please tick the relevant box to indicate that you do not want the information to be used by anybody for direct marketing purposes

If you have previously agreed to us using your personal information for direct marketing purposes, you may change your mind at any time by writing to us or sending an email.

Other than how described in this policy we will not share sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. We may use your personal information to send you promotional information about third parties which we think you may find interesting if you tell us that you wish this to happen.

You may request details of personal information which we hold about you under the Data Protection Act 1998. A small fee will be payable to cover the administrative costs of processing your request. If you would like a copy of the information held on you please write to Action for M.E., 42 Temple Street, Keynsham, Bristol BS31 1EH.

If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.