Privacy Policy

This Privacy 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 Web Site 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 you are using, the web site 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, sign up to our mailing list at a screening event, 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 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). You can control receipt of certain Service-related messages on your Settings page.  If you do not want to receive such messages, you may opt out by following the instructions in the message at any time. 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. 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 Web Site 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 aggregate basis, and The Myalgic Encephalomyelitis Action Network may share this aggregate information with its affiliates and allies. The Myalgic Encephalomyelitis Action Network may also disclose 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.

When We Share the Information:

The Myalgic Encephalomyelitis Action Network is not interested in selling your 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. There are many instances where we will NOT share your information. We will outline clearly below. Unrest is a documentary film created and directed by #MEAction co-founder, Jennifer Brea. Unrest will only receive your information if you sign up to receive informational about Unrest additionally to your #MEAction account. 

Affiliates and Allies: We will not share your email with affiliates and ally groups. Affiliate groups are organizations that also advocate for the ME community. Ally groups are organizations that work on other issue areas but support the work of #MEAction. Neither ally or affiliate groups will have your information shared with them. We will also NOT share your information with any individual or organization who is not engaged in furthering the success 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 affiliated or 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, therefore others who view the petition may see your name attached. We make no effort to conceal your identity on our public petitions or opinion pieces. Only sign if you intend for your name to be publicly associated with the petition or opinion piece. 

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. If there certain function includes working on lists for our organization, then your name may be disclosed. 

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 Web Site 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 makes great efforts to protect the Personal Information provided via the Web Site from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. However, no Internet or e-mail transmission is ever fully secure or error free. In particular, email sent to or from the Web Site 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 strives to insure 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. 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. You may unsubscribe from receiving email at any time by clicking the “unsubscribe” link in the email. 

Updating the Privacy Policy: The Myalgic Encephalomyelitis Action Network does reserve the right to change its policy at any time and from time to time without prior notice as necessary to support the movement.  Please review this Privacy Policy periodically, and especially before you provide any Personal Information. This Privacy Policy was last updated on the date indicated above. Your continued use of the Web Site 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 Web Site.  The Privacy Policy does not apply to any unsolicited information provided to The Myalgic Encephalomyelitis Action Network. 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 Web Site. The Web Site may contain links to other web sites not operated or controlled by The Myalgic Encephalomyelitis Action Network (the “Third Party Sites”). Many of our support groups are on the Facebook platform. Some volunteers also use Slack and other messaging tools. Please refer to the particular platform’s privacy policy that you are using. The links from the Web Site do not imply that The Myalgic Encephalomyelitis Action Network endorses or has reviewed the Third Party Sites. We suggest contacting those sites and/or platforms directly for information on their privacy policies.

Social Media:  Through the Web Site, you can choose to access certain social media web sites 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.

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

Terms of Use:

The following terms and conditions govern all 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”). The Website is offered subject to your acceptance without modification of all of the terms and conditions contained herein and all other operating rules, policies (including, without limitation, The Myalgic Encephalomyelitis Action Network’s Privacy Policy) and procedures that may be published from time to time on this Site by The Myalgic Encephalomyelitis Action Network (collectively, the “Agreement”).

Please read this Agreement carefully before accessing or using the Website. By accessing or using any part of the web site, you agree to become bound by the terms and conditions of this agreement. If you do not agree to all the terms and conditions of this agreement, then you may not access the Website or use any services. If these terms and conditions are considered an offer by The Myalgic Encephalomyelitis Action Network, acceptance is expressly limited to these terms. The Website is available only to individuals who are at least 13 years old.

Your Myalgic Encephalomyelitis Action Network Account. If you create an account on the Website, you are responsible for all activities that occur under the account and any other actions taken in connection with the newsletters built. You must immediately notify The Myalgic Encephalomyelitis Action Network of any unauthorized uses of your account or any other breaches of security. The Myalgic Encephalomyelitis Action Network will not be liable for any acts or omissions by You, including any damages of any kind incurred as a result of such acts or omissions.

Content. If you submit an event, petition, news article, or opinion piece to the Website, post links on the Website, or otherwise make (or allow any third party to make) material available by means of the Website (any such material, “Content”), You are entirely responsible for the content of, and any harm resulting from, that Content. That is the case regardless of whether the Content in question constitutes text or graphics. By making Content available, you represent and warrant that:

  • the downloading, copying and use of the Content will not infringe the proprietary rights, including but not limited to the copyright, patent, trademark or trade secret rights, of any third party;
  • if your employer has rights to intellectual property you create, you have either (i) received permission from your employer to post or make available the Content, including but not limited to any software, or (ii) secured from your employer a waiver as to all rights in or to the Content;
  • you have fully complied with any third-party licenses relating to the Content, and have done all things necessary to successfully pass through to end users any required terms;
  • the Content does not contain or install any viruses, worms, malware, Trojan horses or other harmful or destructive content;
  • the Content is not spam, is not machine- or randomly-generated, and does not contain unethical or unwanted commercial content designed to drive traffic to third party sites or boost the search engine rankings of third party sites, or to further unlawful acts (such as phishing) or mislead recipients as to the source of the material (such as spoofing);
  • the Content is not pornographic, does not contain threats or incite violence, and does not violate the privacy or publicity rights of any third party;
  • you have, in the case of Content that includes computer code, accurately categorized and/or described the type, nature, uses and effects of the materials, whether requested to do so by The Myalgic Encephalomyelitis Action Network or otherwise.

By submitting Content to The Myalgic Encephalomyelitis Action Network, you grant The Myalgic Encephalomyelitis Action Network a world-wide, royalty-free, and non-exclusive license to reproduce, modify, adapt and publish the Content solely for the purpose of displaying and distributing your newsletter. If you delete Content, The Myalgic Encephalomyelitis Action Network will use reasonable efforts to remove it from the Website, but you acknowledge that caching or references to the Content may not be made immediately unavailable.

The Myalgic Encephalomyelitis Action Network grants you a non-exclusive license to use, copy, make derivative works of, display, and/or distribute the Content in ways that are in furtherance of the Mission, as determined in The Myalgic Encephalomyelitis Action Network’s sole discretion, provided that the Content contains no credit or attribution to third-parties. If the content contains credit or attribution to a third-party Content creator, you are required to abide by all license agreements as set forth by the third-party Content creator.

To help create a globally recognized brand for our movement, the Web Site contains registered and unregistered trademarks, service marks, and logos belonging to The Myalgic Encephalomyelitis Action Network and third-parties (the “Trademarks”).  You agree not to display or use the Trademarks in any manner without our prior consent.

Without limiting any of those representations or warranties, The Myalgic Encephalomyelitis Action Network has the right (though not the obligation) to, in The Myalgic Encephalomyelitis Action Network’s sole discretion (i) refuse or remove any content that, in The Myalgic Encephalomyelitis Action Network’s reasonable opinion, violates any The Myalgic Encephalomyelitis Action Network policy or is in any way harmful or objectionable, or (ii) terminate or deny access to and use of the Website to any individual or entity for any reason, in The Myalgic Encephalomyelitis Action Network’s sole discretion.

Medical and Legal Content

All The Myalgic Encephalomyelitis Action Network users who provide answers to legal or medical questions or submit content of a medical or legal nature are intended third-party beneficiaries (“Legal & Medical Contributors”) of this section of the Terms of Use. The answers on this site are provided by Legal & Medical Contributors for informational purposes only. The Myalgic Encephalomyelitis Action Network and Legal & Medical Contributors to the fullest extent permitted by law, disclaim all warranties, either express or implied, statutory or otherwise, including but not limited to the implied warranties of merchantability, non-infringement of third parties’ rights, and fitness for particular purpose.

In no event shall The Myalgic Encephalomyelitis Action Network or Legal & Medical Contributors be liable for any damages (including, without limitation, incidental and consequential damages, personal injury / wrongful death, lost profits, or damages resulting from lost data or business interruption) resulting from the use of or inability to use the Site or the Content, whether based on warranty, contract, tort, or any other legal theory, and whether or not The Myalgic Encephalomyelitis Action Network or its Legal & Medical Contributors is advised of the possibility of such damages. Neither The Myalgic Encephalomyelitis Action Network nor the Legal & Medical Contributors are liable for any personal injury, including death, caused by your use or misuse of the Site or Content.

Content submitted by Legal & Medical Contributors are their sole creation and responsibility. We do not endorse or guarantee the completeness, truthfulness, accuracy, or reliability of any answers or messages posted by Legal & Medical Contributors, nor do we endorse any opinions they express.

Medical Content

Content posted by Medical Contributors is not intended to be medical advice or instructions for medical diagnosis or treatment, and no physician-patient relationship is, or is intended to be, created by Content provided by Medical Contributors.

If you think you may have a medical emergency, call your doctor or your local emergency number (911 in the United States) immediately.

  1. Content is not a substitute for professional medical advice, examination, diagnosis or treatment.
  2. You should not delay or forego seeking treatment for a medical condition or disregard professional medical advice based on Content.
  3. You should always seek the advice of your physician or other qualified healthcare professional before starting or changing treatment.
  4. Content should not be used to diagnose, treat, cure, or prevent disease without supervision of a doctor or qualified healthcare provider.
  5. Content does not recommend or endorse any tests, physicians, products, procedures, opinions or other information.
  6. Content is not regulated by the Food and Drug Administration or any state or national medical board.

Information posted to The Myalgic Encephalomyelitis Action Network publicly or sent in an unsolicited message to a Medical Contributor is not confidential and does not establish a physician-patient relationship without the express consent of the Medical Contributor.

Legal Content

Content posted by Legal Contributors is not intended to be legal advice or form an attorney-client relationship. If you believe you have a legal claim, contact an attorney licensed in your state (or country) immediately to discuss your options. Most state bar associations have services to aid you in finding an attorney. For example, California residents should visit http://www.calbar.ca.gov/Public/Pamphlets/HiringaLawyer.aspx

Content is provided for informational purposes only, with no assurance that the Content is true, correct, or accurate. No action should be taken, delayed, or deferred based on the Content.

  1. Content is not a substitute for professional legal advice or a solicitation to offer legal advice regarding specific facts. Should you ignore this warning and send specific or confidential information in a private message or post it as a comment, there is no duty to keep that information confidential or to discontinue or forego any representation adverse to your interests.
  2. You should not delay or forego seeking legal advice or disregard professional legal advice based on Content. Delay in seeking such legal advice could result in waiver of any claims you may have, depending on the applicable statute(s) of limitation.
  3. Content is not regulated by any state or national bar association.
  4. Information posted to The Myalgic Encephalomyelitis Action Network publicly or sent in an unsolicited message to a Legal Contributor is not confidential and does not establish attorney-client relationship without the express consent of the Legal Contributor.

Links

The Website or content may contain links to third-party websites or resources. You acknowledge and agree that we are not responsible or liable for: (i) the availability or accuracy of such websites or resources; or (ii) the content, products, or services on or available from such websites or resources. Links to such websites or resources do not imply any endorsement by The Myalgic Encephalomyelitis Action Network of such websites or resources or the content, products, or services available from such websites or resources. You acknowledge sole responsibility for and assume all risk arising from your use of any such websites or resources.

Intellectual Property. This Agreement does not transfer from The Myalgic Encephalomyelitis Action Network to you any The Myalgic Encephalomyelitis Action Network or third party intellectual property, and all right, title and interest in and to such property will remain (as between the parties) solely with The Myalgic Encephalomyelitis Action Network. The Myalgic Encephalomyelitis Action Network, the The Myalgic Encephalomyelitis Action Network logo, and all other trademarks, service marks, graphics and logos used in connection with The Myalgic Encephalomyelitis Action Network, or the Website are trademarks or registered trademarks of The Myalgic Encephalomyelitis Action Network or The Myalgic Encephalomyelitis Action Network’s licensors. Other trademarks, service marks, graphics and logos used in connection with the Website may be the trademarks of other third parties. Your use of the Website grants you no right or license to reproduce or otherwise use any The Myalgic Encephalomyelitis Action Network or third-party trademarks without permission or within the guidelines of toolkits or other Network documents.

Changes. The Myalgic Encephalomyelitis Action Network reserves the right, at its sole discretion, to modify or replace any part of this Agreement. It is your responsibility to check this Agreement periodically for changes. Your continued use of or access to the Website following the posting of any changes to this Agreement constitutes acceptance of those changes. The Myalgic Encephalomyelitis Action Network may also, in the future, offer new services and/or features through the Website (including, the release of new tools and resources). Such new features and/or services shall be subject to the terms and conditions of this Agreement.

Termination. The Myalgic Encephalomyelitis Action Network may terminate your access to all or any part of the Website at any time, with or without cause, with or without notice, effective immediately. If you wish to terminate this Agreement or your The Myalgic Encephalomyelitis Action Network account (if you have one), you may simply discontinue using the Website. All provisions of this Agreement which by their nature should survive termination shall survive termination, including, without limitation, ownership provisions, warranty disclaimers, indemnity and limitations of liability.

Disclaimer of Warranties. The Website is provided “as is”. The Myalgic Encephalomyelitis Action Network and its suppliers and licensors hereby disclaim all warranties of any kind, express or implied, including, without limitation, the warranties of merchantability, fitness for a particular purpose and non-infringement. Neither The Myalgic Encephalomyelitis Action Network nor its suppliers and licensors, makes any warranty that the Website will be error free or that access thereto will be continuous or uninterrupted. You understand that you download from, or otherwise obtain content or services through, the Website at your own discretion and risk.

Limitation of Liability. In no event will The Myalgic Encephalomyelitis Action Network, or its suppliers or licensors, be liable with respect to any subject matter of this agreement under any contract, negligence, strict liability or other legal or equitable theory for: (i) any special, incidental or consequential damages; (ii) the cost of procurement for substitute products or services; (iii) for interruption of use or loss or corruption of data; or (iv) for any amounts that exceed the fees paid by you to The Myalgic Encephalomyelitis Action Network under this agreement during the twelve (12) month period prior to the cause of action. The Myalgic Encephalomyelitis Action Network shall have no liability for any failure or delay due to matters beyond their reasonable control. The foregoing shall not apply to the extent prohibited by applicable law.

General Representation and Warranty. You represent and warrant that (i) your use of the Website will be in strict accordance with the The Myalgic Encephalomyelitis Action Network Privacy Policy, with this Agreement and with all applicable laws and regulations (including without limitation any local laws or regulations in your country, state, city, or other governmental area, regarding online conduct and acceptable content, and including all applicable laws regarding the transmission of technical data exported from the United States or the country in which you reside) and (ii) your use of the Website will not infringe or misappropriate the intellectual property rights of any third party.

Indemnification. You agree to indemnify and hold harmless The Myalgic Encephalomyelitis Action Network, its contractors, and its licensors, and their respective directors, officers, employees and agents from and against any and all claims and expenses, including attorneys’ fees, arising out of your use of the Website, including but not limited to your violation of this Agreement.

Applicable Laws. Although The Myalgic Encephalomyelitis Action Network is global, this Web Site is based in Princeton, New Jersey, USA. The Myalgic Encephalomyelitis Action Network makes no claims concerning whether the Content may be downloaded or viewed outside of the United States.  Whether inside or outside of the United States, you agree to be solely responsible for ensuring compliance with the laws of your specific jurisdiction.

Miscellaneous. If there is any dispute between you and The Myalgic Encephalomyelitis Action Network about or involving this Agreement, the Site or the Services, you hereby agree that the dispute shall be governed by and construed in accordance with the laws of Mercer County in New Jersey, USA, without regard to its conflict of law provisions. You hereby agree to submit to the exclusive jurisdiction of the courts in Princeton, New Jersey, USA with respect to any claim, proceeding or action relating to or otherwise arising out of this Agreement, the Site or the Services, howsoever arising, provided always that The Myalgic Encephalomyelitis Action Network may seek and obtain injunctive relief in any jurisdiction.

If any portion of this Agreement is deemed unlawful, void or unenforceable by any arbitrator or court of competent jurisdiction, this Agreement as a whole shall not be deemed unlawful, void or unenforceable, but only that portion of this Agreement that is unlawful, void or unenforceable shall be stricken from this Agreement.

You agree that this Agreement is specifically enforceable by injunctive relief and other equitable remedies without proof of monetary damages.

You agree that if The Myalgic Encephalomyelitis Action Network does not exercise or enforce any legal right or remedy which is contained in the Agreement (or which The Myalgic Encephalomyelitis Action Network has the benefit of under any applicable law), this will not be taken to be a formal waiver of The Myalgic Encephalomyelitis Action Network’s rights and that those rights or remedies will still be available to The Myalgic Encephalomyelitis Action Network.

Last updated April 2015

If you have questions about these Terms, please Contact Us.

Scroll to Top