Privacy Policy

The World ME Alliance 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.

You can contact us here.

This privacy notice tells you what to expect when the World ME Alliance collects personal information. We will process your personal data on the basis of receiving your consent to do so (or, rarely, through a “legitimate interest” if one applies – such as being compelled to by law).

When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection. This is retained indefinitely.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: After approval of your comment, your profile picture is visible to the public in the context of your comment.

We may use, retain or reply to emails you send us. Any saved messages are stored in our secure email system, managed by our third party IT security provider.

If you send us a private message via social media it will not be shared with any other organisations.

Our custom poster maker is provided by, however none of your customised posters are shared with them. Any images uploaded to this are stored on the browser and not on a server. When you click save, your customised poster will be downloaded to your device, but also saved to this website and may be shared by the us on this website or used to promote World ME Day on social media and other platforms.

When someone visits we use a third party service, Google Analytics, to collect standard internet log information and details of visitor behaviour patterns. We do this to find out things such as the number of visitors to the various parts of the site. This information is only processed in a way that does not identify anyone. We do not make any attempt to find out the identities of those visiting our website. If we do want to collect personally identifiable information through our website, we will be up-front about this. We will make it clear when we collect personal information and will explain what we intend to do with it.

This privacy notice does not cover links within this site linking to other websites. Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

We encourage you to read the privacy statements on the other websites you visit.

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 (for example, 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.

You also have a right to ask 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, please send a description of your request (including the information you want to access, if applicable) and proof of your identity to the Data Controller.

Action for M.E. (registered charity number 1036419) is the data controller of personal data collected through the website. This is because the CEO of Action for M.E. is the chair of the World ME Alliance and is also Action for M.E.’s data protection officer (DPO). You can contact the DPO by emailing: [email protected] or write to the DPO at Action for M.E., 42 Temple Street, Keynsham BS31 1EH. Please mark all correspondence as clearly relating to the World ME Alliance.

You can also make a complaint to our regulatory authority, the ICO. Contact their helpline by phone on 0303 123 1113 or by using their livechat at

We strive to ensure your data is properly protected through encryption, firewalls and monitoring. Your data is only seen by people who need to view it for their work.

We keep our privacy notice under regular review. This privacy notice was last updated Monday 4th October 2021.

Cookie Policy

This site uses cookies – small text files that are placed on your machine to help the site provide a better user experience. In general, cookies are used to retain user preferences, store information for things such as shopping carts, and provide anonymised tracking data to third party applications such as Google Analytics.

If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

As a rule, cookies will make your browsing experience better. However, you may prefer to disable cookies on this site and on others. The most effective way to do this is to disable cookies in your browser. We suggest consulting the Help section of your browser or taking a look at the About Cookies website which offers guidance for all modern browsers.

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