Privacy Policy


This Privacy Policy (“Policy”) sets forth our policy with respect to all information collected from you during your use of the The Myalgic Encephalomyelitis Action Network website and all content, services and products available at or through the website. The Website is owned and operated by The Myalgic Encephalomyelitis Action Network (“The ME Action Network”, “#MEAction”).

General Policy: The Myalgic Encephalomyelitis Action Network has a firm commitment to internet privacy. You can view most portions of The Myalgic Encephalomyelitis Action Network website without creating an account, telling us who you are, or revealing any personally identifiable information (“Personal Information”). The only information we collect from an anonymous website visit is information that cannot be used to specifically identify you (“Non-Personal Information”), which includes details like the name of your internet service provider, the browser and type of machine or device you are using, the website that referred you to us, the pages you request and the date and time you request them.

The only time we collect Personal Information is when you voluntarily provide such information, such as when you contact us with inquiries, create an account, submit an Action or campaign, sign a petition, or post in our Action center. We do encourage you to voluntarily share Personal Information with us, because we can’t build the movement around Myalgic Encephalomyelitis without you. If you create an account you provide us with Personal Information about yourself such as your name and email address. Your name and the other information you add to your profile will be available to be seen by other website members if your profile is not hidden from the accounts directory.  We may use your email address to send you service-related notices (including any notices required by law, in lieu of communication by postal mail). We may also use your contact information to send you marketing email messages. If you do not want to receive such messages, you may opt out by following the instructions in the message. If you correspond with us by email, we may retain the content of your email messages, your email address and our responses.  By voluntarily providing us with Personal Information, you are consenting to our use of it in accordance with this Privacy Policy.

How We Use the Information:

Non-Personal Information:  We use the Non-Personal Information collected to generate statistics and measure website activity in order to improve the quality of our website for our visitors.

Personal Information: We use the Personal Information you provide in a manner that is consistent with this Privacy Policy and applicable law. If you provide Personal Information for a certain reason, we may use the Personal Information in connection with the reason for which it was provided.  For example, if you submit an Action, we will use your Personal Information to send you updates and other information about the campaign. If we intend on using any Personal Information in any manner that is not consistent with this Privacy Policy, we will inform you of the anticipated use before the Personal Information is collected.

Aggregated Personal Information:  In an ongoing effort to accomplish our mission and understand website visitors better, The Myalgic Encephalomyelitis Action Network may conduct research on its visitor’s demographics and interests based on the Personal Information and other information provided to us. This research may be compiled and analyzed on an anonymous and aggregate basis, and The Myalgic Encephalomyelitis Action Network may share this anonymous and aggregate information with its affiliates and allies. The Myalgic Encephalomyelitis Action Network may also disclose anonymous and aggregated visitor statistics in order to describe the size, scope, and demographics of its network. This aggregate information does not identify you personally.

Storage:  Both Personal Information and Non-Personal Information collected in accordance with this Privacy Policy may be stored by The Myalgic Encephalomyelitis Action Network itself or it may be included in databases owned and maintained by our affiliates, agents or service providers.Personal information will be stored for an unlimited time unless otherwise directed by individual.

When We Share the Information:

The Myalgic Encephalomyelitis Action Network does not sell your Personal Information. We consider this information to be a vital part of our relationship with you. There are, however, certain circumstances in which we may share your Personal Information with certain third parties without further notice to you, as set forth below:

Affiliates and Allies: We may share your name and/or email address with trusted ME organizations that share our mission but only if you know what you are signing up for is a part of a joint action. We will not share your information with any individual or organization who is not engaged in furthering the mission of The Myalgic Encephalomyelitis Action Network.

Action and Signup Pages:  We do not share the information you’ve given us on Action and Signup pages with unaffiliated groups or individuals without your explicit permission. For petitions or news and opinion pieces, we treat your name, city, state, and comments as public information.

Agents, Consultants and Related Third Parties: The Myalgic Encephalomyelitis Action Network sometimes hires other companies to perform certain functions. Examples of such functions include mailing information, maintaining databases, and processing payments. When we employ another company to perform a function of this nature, we take precautions to provide them with only the information that they need to perform their specific function and they are not allowed to keep or share records..

Legal Requirements: We may disclose your Personal Information if required to do so by law or in the good faith belief that such action is necessary to (i) comply with a legal obligation, (ii) protect and defend the rights or property of The Myalgic Encephalomyelitis Action Network, (iii) act in urgent circumstances to protect the personal safety of website visitors or the public, or (iv) protect against legal liability.

Account Creation: By registering an account/password/Action, we may also create an account for you on our affiliated platforms so you can easily manage navigate all features.

Security: The Myalgic Encephalomyelitis Action Network  takes commercially reasonable precautions to protect the Personal Information provided via the website from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. However, no Internet or email transmission is ever fully secure or error free. In particular, e-mail sent to or from the website may not be secure. Therefore, you should take special care in deciding what information you send to us via email.

The Myalgic Encephalomyelitis Action Network also takes measures designed to ensure the secure collection and transmission of sensitive visitor payment information using industry accepted data collection and encryption methodologies. If you choose to make a donation to The Myalgic Encephalomyelitis Action Network, your credit card information will be used only for transactions through our secure online payment system. If you choose to make that donation recurring, the information will be stored by our third party payment processors, and is not stored or seen by The Myalgic Encephalomyelitis Action Network. Otherwise, the Myalgic Encephalomyelitis Action Network does not sell or otherwise disclose such visitor payment information outside the organization.

Updates and Email Tracking: If you subscribe to email updates from The Myalgic Encephalomyelitis Action Network, we will strive to provide you accurate and timely information about our campaign activities. In order to improve our engagement with our network, we may track whether the emails we send to you are being opened and whether the links they contain are being clicked. While the vast majority of communications will come to you direct from The Myalgic Encephalomyelitis Action Network, some may come from affiliates or other trusted allies of The Myalgic Encephalomyelitis Action Network for special cases like organizing events that further The Myalgic Encephalomyelitis Action Network’s mission in your area. You may unsubscribe at any time.

Updating the Privacy Policy: The Myalgic Encephalomyelitis Action Network reserves the right to change this Privacy Policy at any time and from time to time without prior notice.  Please review this Privacy Policy periodically, and especially before you provide any Personal Information. This Privacy Policy was last updated on the date indicated below. Your continued use of the website after any changes are made to this Privacy Policy indicates your agreement with the terms of the changed Privacy Policy.

Exclusions: This Privacy Policy only applies to information collected by The Myalgic Encephalomyelitis Action Network through the website.  The Privacy Policy does not apply to any unsolicited information provided to The Myalgic Encephalomyelitis Action Network through the website or through any other means. This includes, but is not limited to, information posted to any public areas of the Web Site and any unsolicited submissions. All such information will be treated as public information.

Links to Other Web Sites:  This Privacy Policy applies only to the website. The website may contain links to other web sites not operated or controlled by The Myalgic Encephalomyelitis Action Network (the “Third Party Sites”). The policies and procedures we described here do not apply to the Third Party Sites. The links from the website do not imply that The Myalgic Encephalomyelitis Action Network endorses or has reviewed the Third Party Sites. We suggest contacting those sites directly for information on their privacy policies.

Social Media:  Through the Web Site, you can choose to access certain social media websites and services that are owned and controlled by third parties (e.g. Facebook and Twitter) (the “Social Media Services”). When you elect to access and use the Social Media Services, you will be sharing your information (which will include personal information if you elect to share such information) with those Social Media Services. As with other Third Party Sites, the information that you share with the Social Media Services will be governed by the privacy policies and terms of service of the providers of such Social Media Services and not by the policies and procedures we describe here.

Updates to this Policy: We will notify you of any updates to this Policy by posting the updated version on our website.  We encourage you to periodically check back and review this Policy so that you will be aware of our practices.

Last updated  December 2021
If you have questions about this policy, please Contact Us. If you wish to make any changes to your personal information (name, email, address) that we have on file, please contact us via the link in the sentence above. 

Other Terms and Conditions: Your access to and use of the Web Site is subject to the Terms of Use.

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