U.S. ME/CFS CLINICIAN COALITION
The U.S. ME/CFS Clinician Coalition (The “Coalition”), also known as the ME/CFS Clinician Coalition, is a coalition of clinicians experienced in the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Their website is available at MECFSClinicianCoalition.org.
Policy Last Updated August 29, 2020
1. WHAT USER INFORMATION WE COLLECT
We collect two types of user information:
- Personal Information:
- Users of The Website may knowingly provide personal information when they report a technical issue using the relevant form on the Contact page of The Website. The personal information collected is limited to the user’s name and email address.
- Medical providers may knowingly provide personal information through a form for medical providers on the Contact page of The Website, and by email, surveys, and other online mechanisms provided by The Coalition from time to time. The personal information collected about medical providers on the Contact page includes the medical provider’s name, professional degree, clinical practice name, city, state, zip code, telephone number, and email address. These mechanisms are strictly intended only for medical providers and information submitted by anyone else through these mechanisms will be deleted.
- By voluntarily submitting the requested personal information to The Coalition through the forms on the Contact page of The Website or through other mechanisms, you are voluntarily opting in to The Coalition having that personal information. If you do not wish to submit personal information to the Coalition, you must not use the forms on the Contact pace of The Website or other mechanisms.
- The Website does not knowingly collect personal information from anyone under the age of 18 and will delete information determined to be from such individuals.
- The Website does not knowingly collect personal information about a particular patient and will delete such information if submitted.
- The Website does not collect any personal financial information about anyone.
- De-identified Information: We may also track Internet Protocol (IP) addresses, which do not contain any personal information. We use IP addresses to monitor and improve performance and for other lawful purposes in connection with The Website. We can use IP addresses to identify the source and volume of traffic on The Website, so we can allocate resources to servers/networks in different regions. We also use IP address security filters to prevent known blacklisted IP addresses from accessing The Website. Other deidentified information that we may track includes which pages are accessed, files downloaded, search engine used, operating system, and type of web browser used by users of The Website.
2. HOW PERSONAL INFORMATION IS USED
We use the personal information you voluntarily provided to respond to the submissions you made through the mechanisms defined above. If you are a medical provider and have opted in to future communications from The Coalition, we will use your email address to send those communications. We will not knowingly respond to anyone under the age of 18.
3. CHANGING YOUR PERSONAL INFORMATION
You may request that we update your personal communication at any time. You may also request that we tell you what personal information we have about you. This can be done by using the forms on the Contact page. Appropriate mechanisms will be used to validate such a request by asking specific questions about your name, phone number, email address and location as appropriate.
4. NO SHARING OF PERSONAL INFORMATION
The Coalition will not sell, rent, lease, or share your personal information to any other organization or individual under any circumstance. We keep the identity of those who contact us in complete confidence. Use of personal information will be limited to responding to the requests and submissions you make through The Website, email, surveys, and other mechanisms as defined above; for communicating to medical providers who have opted in to future communications from The Coalition; and for the internal purposes of The Coalition.
5. SECURITY OF YOUR PERSONAL INFORMATION
We use commonly accepted industry standards to help protect your personal information including limiting access to personal information to only those who require it, ensuring third-party service providers protect the confidentiality of your information, encrypting forms that collect information, and storing information on secure computers.
Electronic storage and/or transmission is never completely secure. We strive to protect your personal information but are not able to guarantee its absolute security. If you are concerned that your personal information may not be secure, you may choose to not submit personal information or, if already submitted, to have it deleted. Under no circumstances are we liable for any loss or damage of any kind incurred as a result of exposure of personal information. We are also not responsible for the security of information you transmit over networks not controlled by us, including the internet and wireless networks.
6. HOW LONG DO WE KEEP YOUR INFORMATION
We will maintain a record of your personal information for as long as is necessary to support your interactions with us. If you ask to opt out of communications, we may continue to maintain a record of your information to enable us to comply with your request not to be contacted.
The U.S. ME/CFS Clinician Coalition may place Internet “cookies” on your hard drive. Internet cookies contain a unique identifier that many websites frequently send to your web browser to be stored on your computer’s hard drive in order to save data about you, such as your name, password, user-name, screen preferences, and the pages of a website you have viewed. Internet cookies also allow us to recognize you and customize your session accordingly when you revisit the site.
Most browsers automatically accept cookies unless the user turns them “off”. Your browser ‘Help’ instructions will have additional information about how to manage their use on your computer. If you decline cookies, you can still use the site and basic navigation features, but you may not use some interactive features of The Website.
8. PERSONAL INFORMATION COLLECTED BY EXTERNAL SITES