Privacy Policy

An audio file of the following privacy policy is available below:

Action for M.E. on behalf of DecodeME (formally known as The ME/CFS Biomedical Partnership) 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.

This privacy notice tells you what to expect when Action for M.E. collects personal information when you visit the DecodeME website. 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).

This privacy policy doesn’t cover the DecodeME questionnaire portal. For more information on the DecodeME questionnaire privacy notice visit

Action for M.E. offers an email update service to the public. We collect personal data in order to provide this service. We have to hold the details of people who have requested this service in order to provide it. However, we only use these details to provide the service the person has requested and for other closely related purposes (for example, to carry out a survey to find out if people are happy with the service they received).

We use a third party provider (SendinBlue) to deliver our email updates. We will gather statistics around email opening to help us monitor and improve our e-newsletter. In compliance with UK law, subscribers will be given the opportunity to unsubscribe at any time through an automated system. This process will be detailed at the footer of each e-newsletter. If an automated unsubscription system is unavailable, clear instructions on how to unsubscribe will be detailed instead.

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 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. 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.

Social media 

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

Sometimes, we may approach a study participant to see whether they might like to tell their story on social media. But we won’t use their personal information on social media without their explicit approval. 

Outside of this, we’ll only use social media to communicate with you. We may store your Facebook web address, Facebook email address or Twitter or Instagram username so that we can keep communicating with you. We’ll store this data securely in our contact management database, along with your other contact details that you gave us. 

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 a Management Group member and PPI Steering Group Chair and is also Action for M.E.’s data protection officer (DPO). You can contact the DPO by emailing: (opens in new window) 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 DecodeME Partnership.

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. Your personal data will be kept until the closure of the project.

We keep our privacy notice under regular review. This privacy notice was last updated Friday 17 September 2022.

A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research