Privacy Policy
Action for M.E. manages this website and communications on behalf of the ME Genetics Centre of Excellence.
Action for M.E., on behalf of the the ME Genetics Centre of Excellence, 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 Action for M.E. collects personal information on behalf of the ME Genetics Centre of Excellence. 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).
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.
When someone visits www.appgme.co.uk 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 Action for M.E. is manages communications for the ME Genetics Centre of Excellence, and therefore manages this website and related communications. You can contact the Data Protection Officer (DPO) by emailing: questions@actionforme.org.uk 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 ME Genetics Centre of Excellence.
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 www.ico.org.uk/livechat.
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 on 30th May 2025.
Cookie Policy
What are cookies?
This Cookie Policy explains what cookies are and how we use them, the types of cookies we use i.e, the information we collect using cookies and how that information is used, and how to manage the cookie settings.
Cookies are small text files that are used to store small pieces of information. They are stored on your device when the website is loaded on your browser. These cookies help us make the website function properly, make it more secure, provide better user experience, and understand how the website performs and to analyze what works and where it needs improvement.
How do we use cookies?
As most of the online services, our website uses first-party and third-party cookies for several purposes. First-party cookies are mostly necessary for the website to function the right way, and they do not collect any of your personally identifiable data.
The third-party cookies used on our website are mainly for understanding how the website performs, how you interact with our website, keeping our services secure, providing advertisements that are relevant to you, and all in all providing you with a better and improved user experience and help speed up your future interactions with our website.
Manage cookie preferences
You can change your cookie preferences any time below.
In addition to this, different browsers provide different methods to block and delete cookies used by websites. You can change the settings of your browser to block/delete the cookies. Listed below are the links to the support documents on how to manage and delete cookies from the major web browsers.
Chrome: https://support.google.com/accounts/answer/32050
Safari: https://support.apple.com/en-in/guide/safari/sfri11471/mac
Internet Explorer: https://support.microsoft.com/en-us/topic/how-to-delete-cookie-files-in-internet-explorer-bca9446f-d873-78de-77ba-d42645fa52fc
If you are using any other web browser, please visit your browser’s official support documents.