Our privacy policy

This privacy notice tells you what to expect when the Welsh Association of ME/CFS Support (“we”/”us”) collect information that identifies you (your “personal data”), how we will use that information and what your rights are in relation to your personal data. Where we process your personal data/information, the Welsh Association of ME/CFS Support (registered charity number 1144534) is the controller of that personal data/information.

How we process your personal data

The Welsh Association of ME/CFS Support will only collect, process and store personal data that you have willingly provided to us. Our aim is to be open about collecting this information and clear about what we will use it for, in line with the applicable data protection laws. You do not need to give us any personal data, although as a result of your use of our website we may collect cookies and other related information. Depending on which Welsh Association of ME/CFS Support service you access, we may collect the following categories of personal data: name, address, email address, phone number and/or medical condition.

Depending on which Welsh Association of ME/CFS Support service you access, we may collect the following categories of personal data: name, address, email address, phone number and/or your medical condition. If you choose not to provide us with your personal data it may affect your use of some of our services.

We will only process your personal data where we have a legal basis to do so under data protection laws. Our legal basis for processing your personal data may be:

  • that you have given your consent to the use of your personal data for a specific purpose set out in this notice. Where our processing is based on your consent, you have the right to withdraw your consent at any time.
  • we are required to process your personal data to comply with a legal obligation that applies to us.
  • the processing is necessary in our legitimate interests or those of a third-party, provided that these are not overridden by your rights and freedoms in relation to your personal data.

How long do we keep your personal data?

Your data will be held for no longer than 18 months.

The criteria we use for determining the retention period is based on length of contact with a sample audit of various contacts and various legal requirements; the purpose for which we hold data and guidance issued by relevant regulatory authorities including, but not limited to, the UK Information Commissioner’s Office (ICO).

Why we process your personal data?

  • If you use the services of the Welsh Association of ME/CFS Support.
  • If you decide to share your story 
  • If you opt-in to receive our any of our e-newsletters. 
  • If you donate to us 
  • If you email us 
  • If you contact us via social media 
  • If you visit our website
  • If you use our forums 

The Welsh Association of ME/CFS Support offers several services to the public, including those providing support to individuals affected by ME.

We collect personal data 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 monitoring or evaluating the services we provide. Where we process your personal data for this purpose, we will do so based on our legitimate interests, specifically.

We must hold the details of the people who have requested the service in order to provide it. However, we only use these details to provide the service the person has requested and for closely related purposes. For example, we might use information about people who have contacted us for help to judge the level of service they received.

When people do subscribe to our services, they can cancel their subscription at any time and are given an easy way of doing this.

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 etc and to record your marketing preferences.

We use a third party (Mailchimp) to deal with our e/newsletters, but they are only allowed to use the information to send out the e/newsletters.

Some people choose to tell us about their experiences with ME to inform our work. This may include them sharing sensitive information related to their health. Where we process your personal data for this purpose, we will do so based on your consent.

If you choose to give us your consent to do so, this information may be made anonymised and used to inform our campaigning work with various Health and Government departments as well as in media work. It may also be used in our promotional leaflets and in documents like our annual report or other reports that we may produce.

We use a third-party provider, Mailchimp, to deliver our monthly e-newsletters. We gather statistics around email opening to help us monitor and improve our e-newsletter. Where we process your personal data for this purpose, we will do so based on your consent.?

In compliance with UK Law, subscribers are given the opportunity to unsubscribe at any time through an automated system. This process is detailed at the footer of each e-newsletter. If an automated un-subscription system is unavailable, clear instructions on how to un-subscribe will be detailed instead.

For major donors we may sometimes look at publicly held information through Companies’ House, the Charity Commission, media stories and internet search engines, to better understand you and your philanthropic priorities. Where we process your personal data for this purpose, we will do so based on our legitimate interests, specifically so that we can ensure our funders align with our organisational values, and to protect the reputation of the organisation.

We may use, retain for a maximum of 18 months, or reply to emails you send us. Any saved messages are stored in our secure email system, managed by individuals who comply with our Confidentiality policy. Where we process your personal data for this purpose, we will do so based on our legitimate interests, specifically to use your data in a way that people would reasonably expect (responding to your enquiry) and that have a minimal privacy impact.

If you send us a private message via social media, it will not be shared with any other organisations. Where we process your personal data for this purpose, we will do so based on our legitimate interests, specifically to use your data in a way that people would reasonably expect (responding to your enquiry) and that have a minimal privacy impact.

This information is only processed in a way which 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 honest about this. We will make it clear when we collect personal information and will explain what we intend to do with it.

This privacy policy does not cover links within this site linking to other websites. We encourage you to read the privacy statements on any other websites you visit.

When you visit our website www.wames.org.uk 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.

How do we keep your data safe and up to date?

We endeavour to ensure your data is properly protected through firewalls and monitoring. Your data is only seen by people who need to view it for their work and our volunteers are trained in protecting your information.

Where possible, our records are kept up to date. It is easier for us to do this if you let us know when your details change.

Your rights in relation to your personal data

You have the right to see the information we hold about you under applicable data protection laws. If we do hold information about you, we will:

  • give you a description of it
  • tell you why we are holding it
  • tell you who it could be disclosed to
  • let you have a copy of the information.

You also have a right to ask us to correct, delete, or restrict our processing of 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 may also be able to object to our processing of your personal data.

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 by email to or write to us at The Coach House, Frongog, Aberystwyth SY23 3HN.

When can we disclose your personal data?

We may disclose personal data to:

  • A public authority in the event that we are required to do so by law
  • A third party where we are under a legal obligation to transfer it to them.
  • A third party where it is necessary to protect your vital interests or those of another natural person

Your right to complain

If you are not happy about the way in which we process your personal data, please email You also have the right to make a complaint to the UK Information Commissioner’s Office.

The Welsh Association of ME/CFS Support’s data protection officer (DPO) is Sylvia Penny. You can contact the DPO by emailing .

Changes to this privacy policy

We keep our privacy notice under regular review. This privacy notice was last updated on 23 May 2026. Our Privacy Policy will be reviewed annually.