Frequently Asked Questions

Data Storage

All data collected on this website is stored in an encrypted database, at the web hosting facility. The web and database hosting are managed by 1&1 IONOS (www.ionos.com). The database itself is encrypted with a password. The password is not stored on the file system - it is hashed upon entry and compared to the hashed version. The database is only accessible by the website itself and by a ME Research administrator logging in through a password protected 1&1 Admin panel. The database resides on its own server and is not shared with any other service nor any other 1&1 web hosting client. The database and website are backed up daily by 1&1 and stored only on the dedicated server.

Data Protection

1&1 IONOS employs firewalls to avoid and prevent attacks on its hosted sites. 1&1 also runs a virus scan against all its websites daily to identify suspicious and malicious files or programs. Furthermore, ME Research uses Wordfence, a Wordpress service to block attacks from known offending IP addresses and to protect against hacks (more details can be found at: www.wordfence.com). My personal access to the website is through SFTP (secure file transfer) and HTTPS (encrypted web browsing), both secured protocols. The site uses an SSL certificate for verification of website ownership (you can verify it at https://www.digicert.com/help/). Furthermore, the website uses SiteLock (www.sitelock.com) as an added layer of website security - the website is scanned daily and the logo (bottom left of each page) is updated daily.

Data Distribution

None of the data collected on this website is distributed. As described on this website's pages, members' name and contact details are not sent to researchers. ME Research does not claim every member actually has ME; it is up to the qualified researcher to make that assessment. The researcher will screen everyone who wishes to participate in their study, whether they come from ME Research or not. At some point in the future, aggregated data may be provided to a researcher who asks to know the number having a specific criteria. For example, a researcher may be interested in how many members have headaches, or how many members live in eastern Europe or are females over age of 50. Regardless of the answer it is up the member to decide and contact the researcher. As stated in the Privacy Policy, the only time personal information may be distributed outside is if law enforcement or government officials request it, with justification. If this ever occurs, the affected member or members will be notified.

If anyone has questions not answered here or any of the points above could be clarified, please click the Feedback link and we will address your comments. Thank you.

Researchers will periodically develop studies for which they need participants. As we record these studies on the website, we'll post the details of the study and inform you by sending an email advising you of a newly posted study for your consideration.
No. It is an opt-in agreement. You can choose which studies you want to participate in. The study listing provides all the details necessary to contact the researcher(s). At minimum, there are researcher names, telephone numbers and email addresses.
Unlikely. We anticipate that researchers will be looking for a specific subset of ME sufferers. In the Studies page, we'll post the profile the sufferers they are looking for.
Very unlikely. Usually it is the other way around, when researchers may provide some nominal compensation for your time to participate in the study.
None. It is up to you to decide when/if you contact a researcher. Before reaching out to you, the study will be posted on this site. It will explain what is needed and what researcher wants to achieve. From there, you can decide if you are comfortable with participation. You contact them. All the details are in the study listing.
None. At this time, we expect you to contact the researcher. Contact details are listed with each study. After you contact the researcher, he/she will explain the study in more detail and if you consent, they will perform screening to see if you have the conditions they want to study.
This information is for screening purposes. For example, a researcher may ask us for the number of members in a specific country, with a specific symptom. We'll provide the count and the researcher will decide if they want to expand the study or adjust their criteria. All this would occur before any offers to participate.
Firstly, the website runs on SSL (Secure Socket Layer) - all communication between your browser and the website is encrypted (look for https in the URL bar). Secondly, there is no provision for researchers to browse the information entered by any member. Thirdly, members cannot see each others' information, whether logged in or not. You information is never and will never be shared or sold.
It all depends on the studies being undertaken and how many studies need participants. As ME research accelerates and the number of members on our site increases, we hope to have many studies from which members can choose.
You can, but we suggest you have them sign up themselves because it is their information that goes into the site. However, if you do sign up on behalf of a sufferer, you can indicate this on the Personal form (select Relative/Friend of someone suffering from ME)
Yes, the privacy policy is accessible from every page - there is a link in the page footer. Privacy is a serious subject and we strictly adhere to the policy.
We don't. Simple as that. This is a non-profit initiative. There is no advertising nor any other revenue stream. This is a volunteer project.
Click the menu item Logout or Log In, depending on where you are. On the Login screen, click "Lost your password?", which is located below the username and password fields. Locate the Password Reset email (especially SPAM folder) - then click the link and you'll come back to ME Research Login page to change your password.
For your safety, ME Research requires you to change your password every 90 days. If you actually have unique passwords for every login you own, then this wouldn't be required. But many of us duplicate at least a few passwords across multiple sites and logins. As a result, changing your password here (and elsewhere) nullifies any stolen credential data. Check if your email address has been subject to theft: https://haveibeenpwned.com/
Yes, just click on the Feedback link in the page footer. Your account and all your information will be permanently purged within 14 days; you will be emailed when the deletion is complete; afterwards you will no longer be able to log in nor will you receive communication about new studies. You are able to register again in the future.
Personal Information Collected
  • Email Address
  • Name
  • Country of Residence
  • City
  • Province/State/Region
  • Postal Code
  • Type of Member (sufferer or not)
  • Gender
  • Birth Date
Medical Information Collected
  • Start of Condition
  • Ability to Work
  • Condition Progression
  • Symptopms
  • Diagnosed with CFS/ME
  • When Diagnosed
  • Natural Treatments
  • Drug Treatments
It will vary based on the newly available research studies. But generally it would not be more than once a month.