Privacy Policy

This Privacy Statement ("Privacy Statement") explains how RTI International ("RTI," "us," "our," and "we") uses your information and applies to all who use our website, mobile applications, electronic services, social networking sites or other digital platforms (collectively referred to as the "Site").

Please read this Privacy Statement carefully and review it periodically for the latest information about our privacy practices. By using the Site, you agree to the terms of this Privacy Statement. If you do not agree with the practices described in this Privacy Statement, please do not provide us with your personal information or interact with the Site.

We will routinely update this Privacy Statement to clarify our practices and to reflect new or different privacy practices, such as when we add new services, functionality or features to the Site.

1. Types of Information We Collect

We will collect information, including Personal Information and Non-Identifying Information, when you interact with us and the Site, for example when you

  • Access or use the Site;
  • Open or respond to our e-mails;
  • Visit any page online that displays our content; and
  • Connect or link to the Site via social networking sites.

This Privacy Statement does not apply to the collection of information in any way other than by interacting with us or the Site.

2. Your Choices

We think that you benefit from a more personalized experience when we know more about you and what you like. However, you can limit the information you provide to RTI. You may manage how your browser handles Cookies by adjusting its privacy and security settings. Browsers are different, so refer to instructions related to your browser to learn about cookie-related and other privacy and security settings that may be available.

You may manage how your mobile device and mobile browser share certain Device Data with RTI, as well as how your mobile browser handles Cookies by adjusting the privacy and security settings on your mobile device. Please refer to instructions provided by your mobile service provider or the manufacturer of your device to learn how to adjust your settings

You may also manage the sharing of certain Personal Information with us when you connect with us through social networking platforms or applications. Please refer to the privacy policy and settings of the social networking website or application to determine how you may adjust our permissions and manage the interactivity between RTI and your social networking account or your mobile device.

3. How RTI Uses Information Collected on This Site

We (or our Vendors on our behalf), use information collected as described in this Privacy Statement to:

  • Operate, maintain and improve the Site and our services;
  • To provide information to you about our projects should you request information and answer any questions you may have;
  • Perform analytics and conduct client research;
  • To communicate and provide additional information that may be of interest to you about RTI, sometimes by combining your information with information from other sources;
  • Manage our everyday business needs, such as administration of the Site, analytics, fraud prevention, enforcement of our Terms & Conditions, or to comply with the law;
  • Send you reminders, technical notices, updates, security alerts, support and administrative messages, service bulletins, marketing messages, and requested information; and
  • Administer surveys or other promotional activity or events sponsored by us.

When we use your data for the above-defined purposes, we may collect and store any personal information that you provide to us. For example: name, address, post office box, email address, telephone number, internet protocol (IP) address. We may also infer your country of location from the IP address you have used to access our digital platforms. We also may use information collected as described in this Privacy Statement with your consent or as otherwise required or permitted by law.

4. When and Why RTI Discloses Information

We (or our Vendors on our behalf) may share your Personal Information as required or permitted by law:

  • with our Vendors to provide services for us and who are required to protect the Personal Information;
  • to comply with legal orders and government requests, or as needed to support auditing, compliance, and corporate governance functions;
  • to combat fraud or criminal activity, and to protect our rights and users, or as part of legal proceedings affecting RTI;
  • in response to a subpoena, or similar legal process, including to law enforcement agencies, regulators, and courts in the United States and other countries where we operate; or
  • with your consent.

We may also disclose Non-Identifiable Information for the same reasons we might share Personal Information.

We do not share Personal Information with Third-Party Ad-Servers; however, Third-Party Ad-Servers may automatically collect Non-Identifying Information about your visit to the Site and other websites, your device address, your Internet Service Provider and the browser you use to visit the Site. They do this by using Cookies, clear gifs and other technologies. Information collected may be used, among other things, to deliver advertising targeted to your interests and to better understand the usage and visits to the Site and the other websites tracked by these third parties. This Privacy Statement does not cover the collection methods or use of the information collected by Third-Party Ad-Servers, and RTI is not responsible for Cookies or clear gifs in third party ads. We encourage you to review the privacy policies or statements of these third party advertising companies to learn more about their use of Cookies and other technologies. If you would like more information about this practice and to know your choices about not having this information used by third party advertisers, please visit www.networkadvertising.org.

5. How RTI Collects Information

You provide us with your Personal Information when you register, subscribe, or otherwise when you provide us with your Personal Information during your interaction with certain portions of this Site (such as Discussion Forums). We also collect Personal Information when you contact us online for customer service and other support using self-help tools, such as email, or text.

We also receive Personal Information and other online and offline information from Other Sources. RTI will use such information in accordance with applicable laws. Such information, when combined with Personal Information collected as provided in this Privacy Statement, will also be handled in accordance with this Privacy Statement. We also use cookies, tags, web beacons, local shared objects, files, tools and programs to keep records, store your preferences, improve our advertising, and collect Non-Identifying Information, including Device Data and your interaction with the Site.

We use Cookies that contain serial numbers that allow us to connect your Site activity with other information we store about you in your profile or as related to your interactions with the Site. We use session cookies on a temporary basis, such as to manage your view of pages on the Site. We use persistent cookies for a number of purposes, such as retrieving certain information you have previously provided, and storing your preferences. Information from Cookies also tells us about the website you were visiting before you came to the Site and the website you visit after you leave the Site.

When you access these pages or open email messages, we use Pixel Tags and Web Beacons to generate a notice of that action to us, or our Vendors. These tools allow us to measure response to our communications and improve the Site’s pages.

Device Data may be collected when your device interacts with the Site and RTI, even if you are not logged into the Site using your device. If you have questions about the security and privacy settings of your mobile device, please refer to instructions from your mobile service provider or the manufacturer of your device to learn how to adjust your settings.

6. Security

We take the security of your personal information seriously and use commercially reasonable security procedures to protect personal information you provide to RTI. When you submit your information to us, we use industry standard Secure Sockets Layer (SSL) encryption technology to guard your information. In addition, we have security procedures in place to protect our paper-based systems and computerized databases from loss and misuse, and only allow access to them when it is necessary to do so, and then under strict guidelines as to what use may be made of the personal information contained within them.

Where a password is required to access certain areas of our digital platforms, you are responsible for keeping your password secure and confidential. Please do not share or disclose your password to any other person.

While RTI believes these security measures to be adequate, no method of transmission over the Internet, or method of storage is completely secure. Please know that while we will make every effort keep your information secure, there is still a risk that your personal information could be misappropriated, and we cannot guarantee its absolute security.

We do not monitor users of our site beyond the above-mentioned cookie tracking.

In accordance with applicable regulations, we do not collect data from children and do not intend that any portion of the site will be accessed or used by children under the age of thirteen, and such use is prohibited. This site is designed and intended for use by adults. By using rti.org, you represent that you are at least eighteen years old.

In order to provide information to you or to otherwise fulfil contractual arrangements that we have with you, we may need to appoint other organizations to carry out some of the data processing activities on our behalf. These may include, for example, vendors who provide services for us such as payroll services, payment processing organizations, fraud prevention, or employment screening; to comply with legal orders and government requests, or as needed to support auditing, compliance, and corporate governance functions; if we are under a legal or regulatory duty to do so; if it is necessary to do so to enforce a contract with you; to lawfully assist the police with the prevention and detection of crime; where such disclosure is necessary to protect the safety or security of any persons, with your consent; and/or otherwise as permitted under applicable law.

7. Accessing and Correcting Personal Information

You may correct or update your personal information at any time by emailing us at privacy@rti.org. Please include your name, address, date of birth and email address when you contact us as this helps us to ensure that we accept amendments only from the correct person. We encourage you to promptly update your personal information if it changes.

We will securely retain your information for as long as is reasonably necessary and in accordance with applicable law. If you wish to submit a request that your data be deleted, please write to us at privacy@rti.org. You have the right to receive a copy of the personal information that we hold about you. Please write to us at the address above if you wish to exercise this right.

8. Privacy Practices of Third Parties

This Privacy Statement only addresses the use and disclosure of information by RTI through your interaction with the Site. Other websites that may be accessible through links from the Site may have their own privacy statements and personal information collection, use, and disclosure practices. We encourage you to familiarize yourself with the privacy statements provided by these other parties prior to providing them with information.

9. Notice to Residents of Countries outside the United States of America

Please note that RTI is headquartered in the United States of America. If you are located outside the United States and provide your data to RTI, we will take proper steps to ensure that your information is protected in accordance with this privacy policy. In addition, RTI recognizes that the European Union has established a data protection policy effective May 25th, 2018 known as General Data Protection Regulation (GDPR). This regulation applies to countries within the European Union (EU) and governs the transfer of data outside of the EU. In addition, Switzerland has also established a data protection regime pursuant to the Federal Act on Data Protection ("FADP"). These regimes restrict companies in the EEA and Switzerland (collectively, "EEA/CH") from transferring personal data about individuals in the EEA/CH to the United States, unless there is "adequate protection" for such personal data when it is received in the United States. To create such "adequate protection" and allow our Vendors to overcome the restriction on international data transfers established by GDPR and the FADP, we adhere to the Safe Harbor Privacy principles published by US Department of Commerce ("Safe Harbor Principles") with respect to personal data about individuals in the EEA/CH that our subsidiaries and Business Partners in the EEA/CH send to us. More information on the Safe Harbor Principles and RTI’s scope of participation is available at http://export.gov/safeharbor/

If you live outside the United States (including in the EEA/CH), and you use the Site or provide us with Personal Information directly via the Site, your information will be handled in accordance with this Privacy Statement. By using the Site or giving us your Personal Information, you are directly transferring your Personal Information and Non-Identifiable Information to us in the United States. The United States may not have the same level of data protection as your jurisdiction. However, you agree and consent to our collection, transfer, and processing of your Personal Information and Non-Identifiable Information in accordance with this Privacy Statement. You are solely responsible for compliance with any data protection or privacy obligations in your jurisdiction when you use the Site or provide us with Personal Information. Regardless of where we transfer your information, we still protect your information in the manner described in this Privacy Statement.

10. Contact Us; California Privacy Rights and Other Countries

Please contact us if you have any questions or comments about our privacy practices, this Privacy Statement. or about your personal data, please email us at privacy@rti.org or write to us at the following address:

Data Protection Officer, RTI International, P.O. Box 12194, Research Triangle Park, NC 27709

If you reside in Canada, you may have the right to be provided with access to Personal Information that we have collected about you and written information about our policies and practices with respect to the transfer of your personal information to Vendors outside Canada. To find out more, please Contact Us. Pursuant to Section 1798.83 of the California Civil Code, residents of California can obtain certain information about the types of personal information that companies with whom they have an established business relationship have shared with third parties for direct marketing purposes during the preceding calendar year. In particular, the law provides that companies must inform consumers about the categories of personal information that have been shared with third parties, the names and addresses of those third parties, and examples of the types of services or products marketed by those third parties. To request a copy of the information disclosure provided by RTI pursuant to Section 1798.83 of the California Civil Code, please contact us via the email or address stated above. Please allow 30 days for a response.

In all instances where we disclose your information to third parties, we will ensure that your information is appropriately protected.

If you have a complaint regarding any aspect of your personal data or this privacy policy, please write to us at the above address. For individuals located in the European Union, you may contact the appointed Data Protection Authority (DPAs) for your country. A list of DPAs is available here: http://ec.europa.eu/newsroom/article29/item-detail.cfm?item_id=612080

11. Do Not Track

California law requires us to let you know how we respond to web browser Do Not Track (DNT) signals. Because there currently isn't an industry or legal standard for recognizing or honoring DNT signals, we don't respond to them at this time. We await the result of work by the privacy community and industry to determine when such a response is appropriate and what form it should take.

12. Glossary of Terms

"Cookie" means a small amount of information that a web server sends to your browser that stores information about your account, your preferences, and your use of the Site. Some cookies are temporary, whereas others may be configured to last longer. "Session cookies" are temporary cookies used for various reasons, such as to manage page views. Your browser usually erases session cookies once you exit your browser. "Persistent cookies" are more permanent cookies that are stored on your computers or mobile devices even beyond when you exit your browser.

"Device Data" means information concerning a device you use to access, use, or interact with the Site, such as operating system type or mobile device model, browser type, domain, and other system settings, the language your system uses and the country and time zone of your device, geo-location, unique device identifier or other device identifier, mobile phone carrier identification, and device software platform and firmware information.

"Non-Identifying Information" means information that alone cannot identify you, including data from Cookies, Pixel Tags and Web Beacons, and Device Data. Non-Identifying Information may be derived from Personal Information.

"Other Sources" means sources of information that legally provide RTI with your information, and which are outside the scope of this Privacy Statement at the time of collection.

"Personal Information" means information about you that specifically identifies you or, when combined with other information we have, can be used to identify you. This includes the following types of information:

  • Contact Information: your name, postal addresses, email addresses, social networking website user account names, telephone numbers, or other addresses at which you are able to receive communications.
  • Relationship Information: information you provide that enables us to determine lifestyle, interests, and activities, including location information related to your state/province, city, or neighborhood; and areas of interest, the types of deals that interest you, information collected through your interactions with social networks, demographic information (e.g., birth date, age, gender); and
  • Financial Information: information collected from you as needed to process payments for RTI services that you buy, or as provided by you to administer your participation in optional services and programs, such as your payment card number, expiration date, and card verification number.

"Pixel Tags" and "Web Beacons" means tiny graphic images placed on website pages or in our emails that allow us to determine whether you have performed specific actions.

"Third-Party Ad-Servers" means Vendors and other third parties that provide the technology to place ads on websites and track ad performance.

"Vendors" mean, collectively, third parties that perform business operations on behalf of RTI, such as transaction processing, billing, mailing, communications services (e-mail, direct mail, etc.), marketing, data processing and analytics, servicing, collections, or ad management.

Grants that fund MECFSnet are managed by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Disorders and Stroke. This website was supported by a grant from NIH, grant #U24-NS-105535.

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Website design and development by RTI International. RTI is a registered trademark and trade name of Research Triangle Institute. The RTI logo is a registered trademark of Research Triangle Institute.

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What is ME/CFS?

Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.