MEpedia:Privacy policy

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Jump to: navigation, search

Introduction

We are MEAction, a non-profit organization that operates MEpedia. This policy explains how we collect, use, and share your personal information. Please note that:

  • We collect very little personal information about you.
  • We do not rent or sell your information to third parties.

By using MEpedia, you consent to this policy.

This policy applies to our collection and handling of information about you that we receive as a result of your use of MEpedia, including emails and notifications from us or sent to us from you.

With the sole exception of your email address, we believe that you shouldn't have to provide nonpublic personal information to participate in MEpedia. You do not have to provide things like your real name, address, or date of birth to sign up for a standard account or contribute content.

We do not sell or rent your personal information, nor do we give it to others to sell you anything. We use it to figure out how to make MEpedia more engaging and accessible, to see which ideas work, and to make learning and contributing more fun. Put simply: we use this information to make MEpedia better for you.

After all, it's people like you, the champions of free knowledge, who make it possible for MEpedia to not only exist, but also grow and thrive.

Collection & Use of Info

Types of Information We Receive From You & How We Get It

Your Public Contributions

Whatever you post on MEpedia can be seen and used by everyone.

When you make a contribution to MEpedia, including on user or discussion pages, you are creating a permanent, public record of every piece of content added, removed, or altered by you. The page history will show when your contribution or deletion was made, as well as your username (if you are signed in) or your IP address (if you are not signed in). We may use your public contributions, either aggregated with the public contributions of others or individually, to create new features or data-related products for you or to learn more about how MEpedia is used.

Unless this policy says otherwise, you should assume that information that you actively contribute to MEpedia, including personal information, is publicly visible and can be found by search engines. Like most things on the internet, anything you share may be copied and redistributed throughout the internet by other people. Please do not contribute any information that you are uncomfortable making permanently public, like revealing your real name or location in your contributions.

You should be aware that specific data made public by you or aggregated data that is made public by us can be used by anyone for analysis and to infer further information, such as which country a user is from, political affiliation, and gender.

Account Information & Registration

If you create an account on MEpedia, you do not need to give us your real name, address, date of birth, or credit card information.

If you do not create an account, any contributions will be publicly attributed to your IP address.

Your username will be publicly visible, so please be careful about using your real name as your username. Your password is only used to verify that the account is yours. Your IP address is also automatically submitted to us, and we record it temporarily to help prevent abuse. No other personal information is required.

Once created, user accounts cannot be removed entirely (although you can usually hide the information on your user page if you choose to). This is because your public contributions must be associated with their author (you!).

To gain a better understanding of the demographics of our users, to internationalize our services, and to learn how we can improve our services, we may ask you for optional demographic information about yourself. Such information is intended to be private and we will generally hold onto such information only as long as it takes us to compile the aggregate demographic information. Providing such information is always completely optional. If you don't want to, you don't have to—it's as simple as that.

Location Information

GPS & Other Location Technologies

Some features we offer work better if we know what geographic area you are in. We may use GPS (and other technologies commonly used to determine location) to show you more relevant content. We would keep information obtained by these technologies confidential, except as provided in this policy.

Metadata

Sometimes, we automatically receive location data from your device. For example, if you want to upload a photo, we may receive metadata, such as the place and time you took the photo, automatically from your device. Please be aware that, unlike location information collected using GPS signals described above, the default setting on your mobile device typically includes the metadata in your photo or video upload. If you do not want metadata sent to us and made public at the time of your upload, please change your settings on your device.

IP Addresses

Finally, when you visit MEpedia, we automatically receive the IP address of the device (or the proxy server) you are using to access the internet, which could be used to infer your geographical location.

Information Related to Your Use of MEpedia

We use certain technologies to collect information about how you use MEpedia.

Like other websites, we receive some information about you automatically when you visit MEpedia.

We also use a variety of commonly-used technologies, like cookies, to collect information regarding how you use MEpedia, make our services safer and easier to use, and to help create a better and more customizable experience for you.

We want to make MEpedia better for you by learning more about how you use it. Examples of this might include how often you visit MEpedia, what you like, what you find helpful, how you get to MEpedia, and whether you would use a helpful feature more if we explained it differently. We also want this policy and our practices to reflect our community's values. For this reason, we keep information related to your use of MEpedia confidential, except as provided in this policy.

Information We Receive Automatically

Because of how browsers work, we receive some information automatically when you visit MEpedia. This information includes the type of device you are using (possibly including unique device identification numbers, for some beta versions of our mobile applications), the type and version of your browser, your browser's language preference, the type and version of your device's operating system, in some cases the name of your internet service provider or mobile carrier, the website that referred you to MEpedia, which pages you request and visit, and the date and time of each request you make to the MEpedia website.

Put simply, we may use this information to enhance your experience with MEpedia. For example, we may use this information to administer the site, provide greater security, and fight vandalism; optimize mobile applications, customize content and set language preferences, test features to see what works, and improve performance; understand how users interact with MEpedia, track and study use of various features, gain understanding about the demographics of MEpedia, and analyze trends.

Information We Collect

We use a variety of commonly-used technologies, like cookies, to understand how you use MEpedia, make our services safer and easier to use, and to help create a better and more customizable experience for you.

We actively collect some types of information with a variety of commonly-used technologies. These generally include tracking pixels, JavaScript, and a variety of "locally stored data" technologies, such as cookies and local storage. We realize that some of these technologies do not have the best reputation in town and can be used for less-than-noble purposes. So we want to be as clear as we can about why we use these methods and the type of information we collect with them.

Depending on which technology we use, locally stored data can be anything from text, pictures, and whole articles (as we explain further below) to personal information (like your IP address) and information about your use of MEpedia (like your username or the time of your visit).

We use this information to make your experience with MEpedia safer and better, to gain a greater understanding of user preferences and their interaction with MEpedia, and to generally improve our services. We never use third-party cookies, without disclosing any such cookies in our Cookie Statement. If you ever come across a third-party data collection tool that has not been disclosed in our Cookie Statement (such as one that may have been mistakenly placed by another user or administrator), please report it to us at mepedia@meaction.net.

Locally stored data, JavaScript, and tracking pixels help us do things like:

  • Provide you with a customizable experience, such as using cookies to know your language preference or to remember the user preferences you set so we can provide you with the customized look and feel that you want.
  • Deliver more relevant content to you faster. For example, we use local storage to store your most recently read articles directly on your device, so they can be retrieved quickly. Also, we may use cookies to learn about the topics searched so that we can optimize the search results we deliver to you.
  • Understand how you use MEpedia, so that we know what works and what is useful. For example, we might use cookies to learn about the list of articles you are following on your watchlist so that we can recommend similar articles that you may be interested in.
  • Understand how you use MEpedia across different devices, so that we can make MEpedia more efficient and effective for you.
  • Make MEpedia more convenient to use, such as by using cookies to maintain your session when you log in or to remember your username in the login field.

We believe this data collection helps improve your user experience, but you may remove or disable some or all locally stored data through your browser settings, depending on your browser. While locally stored data may not be necessary to use our sites, some features will not function properly if you disable locally stored data or JavaScript.

While the examples above concerning information about you collected through the use of data collection tools are kept confidential in accordance with this policy, please note that some information about the actions taken by your username is made publicly available through public logs alongside actions taken by other users. For example, a public log may include the date your account was created along with the dates that other accounts were created.

How We Use Information We Receive From You

We and our service providers use your information for the legitimate purpose of pursuing our charitable mission, including:

  • To help you share your knowledge with the world.
  • To arrange access to your account and provide you with related service.
  • To send administrative information to you, such as changes to our policies.
  • To allow you to send messages to another person if you choose to do so. Direct communications between users (such as messages sent through the "Email this user" feature), to the extent such communications are nonpublic and stored in or in transit through our systems, are kept confidential by us, except as provided in this policy.

We engage in these activities to manage our relationship with you, because we have a legitimate interest and/or to comply with our legal obligations.

  • We may provide to you custom content, notices and settings and to enhance your experience with MEpedia.

We will customize services, in some instances, at your direction; in all instances, in keeping with our legitimate charitable purpose of pursuing our mission.

  • We may let you know about things that are happening with MEpedia, and to occasionally solicit feedback from you about your experience with MEpedia.
  • We may alert you when there has been a change to an article that you have decided to follow.

We will send these types of emails to you only with your consent. We do not sell, rent, or use your email address to advertise third-party products or services to you. You can manage what kinds of notifications you receive and how often you receive them by going to your Notifications Preferences.

When we give you an opportunity to share your thoughts, we plan on using your answers and any personal information you provide only to improve MEpedia for you and others. Your responses to our surveys and feedback requests are always optional. You can manage what kinds of notifications you receive and how often you receive them by going to your Notifications Preferences.

We may use your public contributions, either aggregated with the public contributions of others or individually, to:

  • Create new features or data-related products for you or to learn more about how MEpedia is used.
  • Perform research and analytics.
  • Fight spam, identity theft, malware and other kinds of abuse.
  • Optimize mobile and other applications.
  • Test features to see what works, understand how users interact with MEpedia, track and study use of various features, gain understanding about the demographics of MEpedia and analyze trends.

We engage in these activities to further our legitimate charitable purpose and/or to comply with our legal obligations.

Other

Location Information

GPS & Other Location Technologies

As stated above, we may use GPS (and other technologies commonly used to determine location) to show you more relevant content. We would keep information obtained by these technologies confidential, except as provided in this policy.

Metadata

As stated above, we may automatically receive location data from your device. For example, if you want to upload a photo, we may receive metadata, such as the place and time you took the photo, automatically from your device. As a reminder, if you do not want metadata sent to us and made public at the time of your upload, please change your settings on your device.

IP Addresses

When you visit MEpedia, we automatically receive the IP address of the device (or the proxy server) you are using to access the internet, which could be used to infer your geographical location. We use this location information to make your experience with MEpedia safer and better, to gain a greater understanding of user preferences and their interaction with MEpedia, and to generally improve our services. We also use personal information in the manner described in the sections of this Policy titled "For Legal Reasons" and "To Protect You, Ourselves & Others."

Sharing

When May We Share Your Information?

With Your Permission

We may share your information when you give us specific permission to do so, for legal reasons, and in the other circumstances described below.

For Legal Reasons

We will disclose your information in response to an official legal process only if we believe it to be legally valid. We will notify you of such requests when possible.

We will access, use, preserve, and/or disclose your personal information if we reasonably believe it necessary to satisfy a valid and legally enforceable warrant, subpoena, court order, law or regulation, or other judicial or administrative order. We will try to notify you via email at least ten (10) calendar days, when possible, before we disclose your personal information in response to a legal demand. However, we may only provide notice if we are not legally restrained from contacting you, there is no credible threat to life or limb that is created or increased by disclosing the request, and you have provided us with an email address.

Nothing in this policy is intended to limit any legal objections or defenses you may have to a third party's request (whether it be civil, criminal, or governmental) to disclose your information. We recommend seeking the advice of legal counsel immediately if such a request is made involving you.

If the Organization is Transferred (Really Unlikely!)

In the unlikely event that the ownership of MEAction changes, we will provide you 30 days’ notice before any personal information is transferred to the new owners or becomes subject to a different privacy policy.

In the extremely unlikely event that ownership of all or substantially all of MEAction changes, or we go through a reorganization (such as a merger, consolidation, or acquisition), we will continue to keep your personal information confidential, except as provided in this policy, and provide notice to you via MEpedia at least thirty (30) calendar days before any personal information is transferred or becomes subject to a different privacy policy.

To Protect You, Ourselves & Others

We, or users with certain administrative rights, may disclose information that is reasonably necessary to:

  • enforce or investigate potential violations of MEpedia policies or guidelines;
  • protect our organization, infrastructure, employees, contractors, or the public; or
  • prevent imminent or serious bodily harm or death to a person.

We, or particular users with certain administrative rights as described below, may need to share your personal information if it is reasonably believed to be necessary to enforce or investigate potential violations of our Terms of Use, this Privacy Policy, or any MEpedia policies. We may also need to access and share information to investigate and defend ourselves against legal threats or actions.

We may guide or direct the selection of certain MEpedia users to hold certain administrative rights, and these users are generally called administrators. Administrative rights may include access to limited amounts of otherwise nonpublic information about recent contributions and activity by other users. Administrators use this access to help protect against vandalism and abuse, fight harassment of other users, and generally try to minimize disruptive behavior on MEpedia. These administrators are accountable to other users through checks and balances: administrators are selected primarily based on the merit of their previous contributions and interactions, and are overseen by their peers through a logged history of their actions. However, the legal names of these administrators are not necessarily known to MEAction.

We hope that this never comes up, but we may disclose your personal information if we believe that it's reasonably necessary to prevent imminent and serious bodily harm or death to a person, or to protect our organization, employees, contractors, users, or the public. We may also disclose your personal information if we reasonably believe it necessary to detect, prevent, or otherwise assess and address potential spam, malware, fraud, abuse, unlawful activity, and security or technical concerns.

To Our Service Providers

We may disclose personal information to our third-party service providers or contractors to help run or improve MEpedia and provide services in support of our mission.

As hard as we may try, we can't do it all. So sometimes we use third-party service providers or contractors who help run or improve MEpedia for you and other users. We give access to your personal information to these providers or contractors as needed to perform their services for us or to use their tools and services. We may put requirements, such as confidentiality agreements, in place to help ensure that these service providers treat your information consistently with, and no less protective of your privacy than, the principles of this policy.

To Understand & Experiment

  • We give volunteer developers access to systems that contain your information to allow them to protect, develop, and contribute to MEpedia.
  • We may also share non-personal information or aggregated information with third parties or the public to inform them about the status or growth of the MEpedia project.
  • When we share information with third parties for these purposes, we may put reasonable technical and contractual protections in place to protect your information consistent with this policy.

The open-source software that powers MEpedia depends on the contributions of volunteer software developers, who spend time writing and testing code to help the software improve and evolve with our users' needs. To facilitate their work, we give some developers limited access to systems that contain your personal information, but only as reasonably necessary for them to develop and contribute to MEpedia.

Please note that, despite the obligations we may impose on developers and third parties, we cannot guarantee that they will abide by any agreement, nor do we guarantee that we will regularly screen or audit their projects.

Because You Made It Public

Information that you post is public and can been seen and used by everyone.

Any information you post publicly on MEpedia is just that – public. For example, if you put your mailing address on your talk page, that is public, and not protected by this policy. And if you edit without registering or logging into your account, your IP address will be seen publicly. Please think carefully about your desired level of anonymity before you disclose personal information on your user page or elsewhere.

Protection

How Do We Protect Your Data?

We strive to protect your information from unauthorized access, use, or disclosure. We use a variety of physical and technical measures, policies, or procedures (such as access control procedures, network firewalls, and physical security) designed to protect our systems and your personal information from unauthorized access, use, or disclosure. Unfortunately, there's no such thing as completely secure data transmission or storage, so we can't guarantee that our security will not be breached (by technical measures or through violation of our policies and procedures).

We will never ask for your password by email (but may send you a temporary password via email if you have requested a password reset). If you ever receive an email that requests your password, please let us know by sending it to mepedia@meaction.net, so we can investigate the source of the email.

How Long Do We Keep Your Data?

Except as otherwise stated in this policy, we try to keep your personal information only as long as necessary to maintain, understand and improve MEpedia or to comply with U.S. law. Once we receive personal information from you, we try to keep it for the shortest possible time that is consistent with the maintenance, understanding, and improvement of MEpedia, and our obligations under applicable U.S. law. Non-personal information may be retained indefinitely.

Please remember that certain information, such as your IP address (if you edit while not logged in) and any public contributions to MEpedia, is archived and displayed indefinitely by design; the transparency of the projects’ contribution and revision histories is critical to their efficacy and trustworthiness.

Important information

For the protection of MEAction and other users, if you do not agree with this Privacy Policy, you may not use MEpedia.

Where is MEAction & What Does That Mean for Me?

MEAction is a non-profit organization based in the United States, with servers and data centers located in the U.S. If you decide to use MEpedia, whether from inside or outside of the U.S., you understand that your personal information will be collected, transferred, stored, processed, disclosed and otherwise used in the U.S. as described in this policy. You also understand that your information may be transferred by us from the U.S. to other countries, which may have different or less stringent data protection laws than your country, in connection with providing services to you.

Our Response to Do Not Track (DNT) signals

We do not allow tracking by third-party websites you have not visited (including analytics services, advertising networks, and social platforms), except as explicitly disclosed in our Cookie Statement.

We do not share your personal information with any third parties for marketing purposes.

Under this policy, we may share your information only under particular situations, which you can learn more about in the “When May We Share Your Information” section of this Privacy Policy.

Because we protect all users in this manner, we do not change our behavior in response to a web browser's "do not track" signal.

Changes to This Privacy Policy

Because things naturally change over time and we want to ensure our Privacy Policy accurately reflects our practices and the law, it may be necessary to modify this policy from time to time. We reserve the right to do so.

We ask that you please review the most up-to-date version of this policy, and consider adding this page to your watchlist to be alerted to new changes. Your continued use of MEpedia after this Privacy Policy has been changed constitutes acceptance of the new version of the Privacy Policy on your part.

Contact Us

If you have questions or suggestions about this Privacy Policy, or the information collected under this Privacy Policy, please email us at mepedia@meaction.net.

Depending on your jurisdiction, you also may have the right to lodge a complaint with a supervisory authority competent for your country or region.

Thank You!

Thank you for reading our Privacy Policy. We hope you enjoy using MEpedia and appreciate your participation in creating, maintaining, and constantly working to improve the world's online encyclopedia for the science, people, and history of myalgic encephalomyelitis.

Please note that in the event of any differences in meaning or interpretation between the original English version of this Privacy Policy and a translation, the original English version takes precedence.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.