Solve ME/CFS Initiative, Inc.
YOU + M.E. Platform Privacy Policy

Last Updated: 12/10/2019

The YOU + M.E. Platform (the “Platform”) is not intended for use in the event of an emergency or other urgent situations. If you believe you may have a medical emergency, call 911 or your local emergency medical system immediately.

This Privacy Policy explains how information about you is collected, used and disclosed by Solve ME/CFS Initiative, Inc. (“Solve ME/CFS”, “we”, “us” or “our”). This Privacy Policy applies to information we collect when you register for or access and use the components of the Platform, including the Solve ME/CFS website located at [Platform hyperlink available after launch] and the associated mobile application that is made available to you upon registration to use the Platform.

We may change this Privacy Policy from time to time. If we make changes, we will notify you by revising the date at the top of the policy and, in some cases, we may provide you with additional notice (such as adding a statement to our website, adding a statement within the Platform application, or sending you a notification). We encourage you to review the Privacy Policy whenever you access the Platform to stay informed about our information practices and the ways you can help protect your privacy.

By accessing or using the Platform, you consent to our collection, use, and sharing of your information in accordance with this Privacy Policy. This Privacy Policy is not a contract and does not create any contractual rights or obligations.

Please use the links below to jump to the sections of our Privacy Policy to learn more:

COLLECTION OF INFORMATION
USE OF INFORMATION
SHARING OF INFORMATION
THIRD-PARTY ANALYTICS
LINKS TO THIRD PARTY SITES
DATA SECURITY
HOW WE RESPOND TO “DO NOT TRACK” SIGNALS
NOTE TO INTERNATIONAL USERS
CONTACT US

COLLECTION OF INFORMATION

Information You Provide to Us

We collect information you provide directly to us through the Platform. For example, we collect information you voluntarily disclose to us while utilizing the Platform to monitor your disease symptoms, or information you voluntarily disclose while registering to use the Platform.

  • Account Information: We may collect various identifying information during the registration process for the Platform. Information we collect may include, but is not limited to, demographic information, individual identifying information, family and individual medical histories, personal medical information, and output from your responses to certain questionnaires offered within the Platform.
  • Health Information: We may collect health information provided by you or generated through your use of the Platform. This includes details of symptom or daily activity. The collection of this information is designed to track the progress of your disease over time.
  • Other Information You Choose to Provide: We may collect additional information that you provide, such as when you request technical or customer support or communicate with us or propose research questions through the Platform.

Information We Collect Automatically When You Use the Platform

When you access or use our Platform, we automatically collect information about you, including:

USE OF INFORMATION

The information you share with us about you, including information regarding your health and your survey responses will be de‐identified. De-identified information is not traceable to you personally. We may use this de‐identified data in research analyses and present the results will in scientific conferences and publications.

We may use your contact information for various purposes, including to:

  • Provide, maintain and improve our Platform
  • Provide and deliver the services you request, and send you related information;
  • Send you technical notices, updates, security alerts and support and administrative messages;
  • Respond to your comments, questions, and requests and provide customer service;
  • Communicate with you about products, services, and events offered by Solve ME/CFS and others, and provide information we think will be of interest to you; this includes information about participation in the Solve ME/CFS BioBank

We may use other information for various purposes, including to:

  • Monitor and analyze trends, usage and activities in connection with our Platform;
  • Conduct research and measurement activities;
  • Detect, investigate and prevent fraudulent transactions and other illegal activities and protect the rights and property of Solve ME/CFS and others; and
  • Carry out any other purpose for which the information was collected.

We also may use aggregated or de-identified information, which cannot reasonably be used to identify you. Once de-identified and aggregated so that data does not personally identify you (for example, we may aggregate data in order to provide greater understanding into your disease, or for use in partnering with researchers or other patients to further explore your disease), it is no longer personal information. Such de-identified and/or aggregated information which does not identify individuals is not subject to this Privacy Policy.

SHARING OF INFORMATION

We may share information about you as follows or as otherwise described in this Privacy Policy:

  • We may share information about you with vendors, consultants and other service providers, including, but not limited to, hosting providers such as Amazon Web Services, during the course of their engagement with Solve ME/CFS;
  • We will not sell, rent, or lease information about you to third parties;
  • We may share information about you if we are required to by law, regulation, or legal process (such as a court order or subpoena or in response to a binding request by a government agency); and
  • We may share information about you with your consent or at your direction.

THIRD-PARTY ANALYTICS

From time to time we may partner with certain third-parties to collect, analyze, and use some of the information described above. For example, we may allow third-parties to review your de-identified information to identify trends. The information collected and generated by third parties may be used to engage in analysis and reporting.

Our Platform may contain links to other web sites, either under the control of Solve ME/CFS or controlled by third-parties. Other websites may also reference our Platform, or provide a link to download our Platform. We encourage our users to be aware when they leave our Platform and/or Website to read the privacy policies of each and every website that collects personally identifiable information. We do not endorse, screen or approve, and are not responsible for the privacy practices or content of such other websites or mobile applications. Visiting these other websites is at your own risk.

DATA SECURITY

Solve ME/CFS takes reasonable measures to help protect information about you from loss, theft, misuse and unauthorized access, disclosure, alteration and destruction.

The Platform data is securely stored in an encrypted mongoDB Atlas cloud database (https://www.mongodb.com/). Personally-identifiable information is handled using processes compliant with industry practice, including use of encryption-at-rest when being stored in the Platform database. Data is transmitted from the Platform to the backend database using industry standard TLS/SSL encryption protocols.

We regularly back up the Platform database to decrease the risk of data loss. Our disaster recovery system also maintains our full suite of security measures to protect backup data. For additional information on security standards, please visit: https://docs.mongodb.com/manual/security/.

HOW WE RESPOND TO “DO NOT TRACK” SIGNALS

Some web browsers have “Do Not Track” or similar features that allow you to tell each website you visit that you do not want your activities on that website tracked. At present, the Website does not respond to “Do Not Track” signals and consequently, the Platform will continue to collect information about you even if your browser’s “Do Not Track” feature is activated.

NOTE TO INTERNATIONAL USERS

The Platform is intended for use in the United States of America only. If you access or use the Platform or contact us from outside of the United States of America, please be advised that (i) any information you provide to us or that we automatically collect will be transferred to the United States of America; and (ii) you explicitly authorize its transfer to and subsequent processing in the United States of America in accordance with this Privacy Policy.

CONTACT US

If you have any questions about Solve ME/CFS’s Platform privacy practices, please contact us at: registry@solvecfs.org or 704-364-0016