• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Privacy policy

Privacy Policy

Effective date: February 11, 2019

Phoenix Rising is committed to protecting and respecting your privacy in compliance with international privacy laws, including the EU General Data Protection Regulation (GDPR): Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data.

If you do not consent to the entirety of this Privacy Policy, do not use our web site and/or forum.

Contents

  • What information we hold about you
  • How your personal information is used
  • Data processing and storage
  • Account removal
  • Cookie policy
  • EU GDPR Rights
  • Acceptance of this policy
  • Changes to this policy
  • Questions

What information we hold about you

The type of data that we collect and process includes:

  • Your name or username
  • Your email address
  • Your IP address
  • Further data may be collected if you choose to share it as a user of the forum and enter information on your member profile

We collect some or all of this information in the following cases:

  • You register as a user on this site.
  • We do a background check when you sign up as a user to see if your IP or email address are on spammer lists, to check if you are a known advertiser, or are attempting to use a sock-puppet account. See "How your personal information is used" for more information.
  • You fill out our contact form.
  • You browse this site. See "Cookie policy" below.
  • You fill out fields on your member profile.
  • You make a donation to our site.
  • You use the search form on our site.

How your personal information is used

Phoenix Rising will not sell, rent, or lease your personal information to third parties unless we have your express permission or are required by law to do so. We may use your personal information to send you information related to Phoenix Rising or your account. We don't use your personal information for direct marketing.

We may use your personal information in the following ways:

Registration - For the purposes of making you a registered user of our site, in order for you to contribute content to this site.

Notifications - We can notify you of activity on our site which may be relevant to you, such as when someone replies to a thread you are watching. We may also wish to communicate with all registered users any important information such as newsletters or announcements by email. You can opt-in to or opt-out of such emails in the preferences section of your account details.

Activity tracking - Your IP address is recorded when you perform certain actions on our site. Your IP address is never publicly visible. We collect non-personally identifiable information about you in the course of your interaction with our site. This information includes technical information about the browser or type of device you're using. This information is used purely for the purposes of analytics and tracking the number of visitors to our site.

We use Google Analytics to track the numbers of visitors to our site, the type of devices they are using, and the pages they view. To opt-out of Google Analytics tracking please see this page. More information about what Google Analytics does with your information can be viewed here.

Background check - When you sign up to become a registered user, or occasionally when you continue to use Phoenix Rising as a registered user, we use your personal information to determine if that information is on known spammer or advertiser lists, to detect former disruptive users, and to detect users that are using sock-puppet accounts.

Our lawful basis for this processing is contained in Art.6(f) of the GDPR regulations, which states: "processing is necessary for the purposes of the legitimate interests pursued by the controller...". Controller meaning "data controller," which in this case is Phoenix Rising. Our legitimate interest is to reduce the occurrences of spam and advertising which are not allowed on our forum, and to limit deceptive or disruptive people from disturbing users and visitors of our forum. Some of this processing is automated, some of it is done manually, but final decision-making is done by a human.

Suicide prevention - If a registered user posts about an imminent suicide plan, a suicide in progress or a detailed plan, forum administrators may notify authorities and pass on the registered user's post, IP address, email address, and other personal information such as the user's name and location if known.

Data processing and storage

Data retention

If you become a registered user of Phoenix Rising’s web site then your personal data will be retained for as long as you have an account.

Some personal data, such as the list of IP addresses you have used to connect to our servers is retained even if your account is disabled. See "Account removal" for more information.

Data we collect is stored on a server located in the United States.

Data protection

We take reasonable measures to protect your data, but you should be aware that no data transfer or storage methods are perfectly secure so we can't guarantee that your information will be entirely safe.

The data protection methods we use include physical security for our server hardware, encrypted connections (HTTPS) between your computer and our server using industry standard TLS, encrypted connections to the services we use for background checks when a user registers for a Phoenix Rising account, password protected accounts, and require all moderators and forum-assistants to sign a non-disclosure agreement.

Account removal

If you have an account and want it to be removed please be aware that we disable accounts instead of completely removing them. We can remove most of your personal information but we have the right to retain certain information such as IP addresses in order to prevent the creation of future sock-puppet accounts and to maintain lists of spammers and banned users to prevent their return.

If you have posted to our forums and a post contains personal information (such as visible IP address, email address, home or work address, phone number etc.) then it can be removed on request. Any forum posts, personal conversations, blog entries, or other content submitted to our forum that doesn't contain personal information will not be removed because removal of that content could disrupt the flow of forum conversations.

As stated in our terms and rules:

We consider all forum posts to be integral to the conversation in the discussion threads in which they are posted, and we therefore don't allow the en masse removal of all your posts. When you post on the forums, you are granting us with a non-exclusive, irrevocable, permanent, unlimited license to use, publish, or re-publish your content in connection with Phoenix Rising. You retain copyright over the content. Posts on the forums cannot be used outside the forums for monetary purposes without the consent of the poster.

To have your account disabled please start a conversation with a moderator or contact us.

Cookie policy

Cookies are small text files which are set by us on your computer that allow us to provide certain functionality on our site, such as being able to log in, or remembering certain user preferences.

We have a detailed cookie policy and more information about the cookies that we set on this page.

Links and Widgets

We are not responsible for the content or practices employed by web sites or services linked to from our web site, including links posted by users. This privacy policy applies only to the Phoenix Rising web site and forum, it does not apply to any linked web sites or services.

Our site includes social media features and widgets such as Facebook login. These features may collect your IP address and record which page you are viewing. These widgets are provided by third parties. If you choose to use these widgets then your interaction with them will be governed by the privacy and GDPR policies of the associated third party web site(s).

EU GDPR Rights

The European Union General Data Protection Regulation provides certain rights to members of the European Union. The GDPR applies to Phoenix Rising because we process personally identifiable information sourced from within member countries of the European Union.

If you believe that Phoenix Rising has breached your rights pursuant to the GDPR, you can report violations to the Information Commissioner’s Office (UK) or to the Data Protection Authority (E.U. member country).

Right to access personal data

If you are a registered user, your account contains most of the personal data we hold about you. If you would like to access personal data that isn't available in your account then you may contact us. Currently the only personal information that isn't listed in your account is the list of IP addresses you have used when connecting, and the information we record when you make a donation.

This right does not extend to general content that you post on the forum, in personal conversations, blogs, or anywhere else on the forum.

Right to correct your personal data

If you believe that information we hold about you is incorrect or incomplete you are able to update most information yourself by accessing the appropriate area of your user profile or by contacting us.

Right to receive a copy of your personal data

If you would like a copy of the personal data that we hold about you, please contact us to receive an XML file.

Right to be forgotten

If you would like to have your forum account disabled, please see the "Account removal" section. Most of your personal information can be removed but we have the right to retain IP addresses in order to prevent future sock-puppet accounts and to maintain lists of spammers and banned members.

If you have posted to our forums and a post contains personal information (such as visible IP address, email address, home or work address, phone number etc.) then it can be removed on request. Any posts that don't contain personal information will not be removed because their removal would disrupt the flow of forum conversations.

Right to object to automated decision making

If you object to our use of automated spam detection services then do not provide us with your express consent to this Privacy Policy and do not use our forum.

Right to object to processing

If you object to our use of the techniques mentioned in the section “How your personal information is used" then do not sign up as a registered user. If you are already a registered member and object to this processing then discontinue your use of the forum and contact us to have your account disabled.

Right to complain about processing carried out by Phoenix Rising

If you believe that Phoenix Rising has breached your rights pursuant to the GDPR, you can report violations to the Information Commissioner’s Office (UK) or to the Data Protection Authority (E.U. member country).

Acceptance of the Privacy Policy

Continued use of our site signifies your acceptance of this Privacy Policy. If you do not consent to the terms of this Privacy Policy, do not use our web site. When registering as a user, we require your express consent to this Privacy Policy.

Changes to the Privacy Policy

We may make changes to our Privacy Policy at any time. If changes are made to our Privacy Policy, you will be required to expressly consent to the revised Privacy Policy before using our web site.

Questions

If you have questions about your personal information that we may be storing or using please contact us.