You + ME Registry + Biobank is a global community of people sharing health information that will further our understanding of ME/CFS + Long Covid + drive identification of treatments + a cure.
A patient registry collects + stores medical information, family health history + other related information from patients for use in medical research. Patient registries are used extensively in healthcare to help medical professionals better understand why + how a disease develops so they are able to conduct research most relevant to the needs of the patient population.
You + ME represents the community we’re bulding. It represents You + Your Disease, You + Your Healthy Control, You + thousands of others who contribute their data, You + the network of researchers who use the data to better characterize these illnesses. Together, we can solve complex illnesses like ME/CFS, Long Covid + other post-viral conditions.
Patient registries facilitate research by enabling participants to share their health experiences with researchers + medical professionals. By completing health surveys, you provide researchers with a richer understanding of complex diseases like ME/CFS + Long Covid. You + ME also includes a biobank, which stores samples such as blood or tissue from participants.
You + ME is an online study that allows you to take part anywhere at any time.
Once you provide consent to participate in the Registry, you will be taken through a Study Visit. Each Study Visit consists of a series of surveys designed to capture your health experience from every angle. To do this, we ask questions about a range of topics such as medical history, quality of life + medications, among others.
In addition, people with ME/CFS or Long Covid can download the You + ME Mobile App to track symptoms, general well-being + other life events as often as daily. This ongoing tracking allows for a more complete picture of the disease + how it changes over time.
The You + ME team may also periodically contact you about opportunities to participate in new research studies or to provide a biological sample (e.g. blood).
The Registry is currently open to participants age 18+ who live in the United States. In coming months, we will launch You + ME | Teen for participants between the ages of 13-17, and You + ME | International for our global community.
If you are a caregiver, you can work with your loved one to complete surveys in You + ME + enter tracking data into the mobile app. Just make sure that you only input information about that person in their profile.
Control participants are critical to the success of You + ME.
To be able to understand what has gone wrong with someone who has developed an illness, we need to be able to compare their biology to someone without the illness being studied.
We plan to expand the Registry globally in coming months.
Absolutely! To add an additional condition, simply go to “My Conditions” and click on the “Add Condition” button. Once you are there, start typing the condition name into the search bar. At first, you will see an auto-populated list of conditions. If your condition is not listed there, that’s OK! Just keep typing it out and continue with the rest of the form as you would normally.
Yes! You are able to view your past responses through the You + ME User Portal. Please use the following steps to view your survey responses:
- Log into your account
- Click on ‘My Surveys’
- Select the Survey you you interested in to view a summary of your responses
Having a smartphone or tablet is not necessary to participate in the Registry! While we offer the You + ME Tracking App to people living with ME/CFS and long-COVID, it is by no means the only way to participate. You can also contribute to the cure through our User Portal, which can be accessed on either a desktop computer or mobile device.
If you don’t have access to a computer, please contact us at firstname.lastname@example.org and we can help collect your data over the phone.
The You + ME Tracking App allows you to customize push notifications based on your preferred schedule – you choose when and how often to track your symptoms! If possible, we ask that you track your symptoms every three days, but you can set the push notifications to more or less frequent, depending on your preference. The more days you track, the more data is available to researchers.
Knowing that many of our community members live with a wide range of symptoms, our Research Team made sure to include the ones that seemed most relevant. Our Symptoms list was developed hand-in-hand with community members and clinicians, so we hope you’ll find many of your symptoms already listed.
At first, you will see only the core (5) symptoms (Brain Fog, Fatigue, Orthostatic Intolerance, Unrefreshing Sleep and PEM) listed. To create a custom list of symptoms, our Symptoms List can be accessed by going to the (“Add New”) sign at the top right hand corner of the ‘Symptoms Tab’.
Once you tap on “Add New”, you will be taken to our comprehensive list of symptoms with a search bar on the top. If you experience a symptom that is not currently listed, you can add it by typing the symptom in the search bar, and tapping on the grey bar. Once the bar turns green, it’s been added to your custom list of symptoms!
As many people living with chronic illness know, symptoms can be triggered or worsened by a range of activities. To help you navigate your illness, we’ve included a comprehensive list of Life Events including those related to diet, social life, wellness and healthcare.
The Life Events list can be accessed by going to (“Add New”) at the top right hand corner of the Life Events Tab. With just a light tap, you will be taken to our list of Life Events with a search bar on the top. If you regularly experience a Life Event that is not currently listed, you can add it by typing the event in the search bar, and tapping on the grey bar. Once the bar turns green, it’s been added to your custom list of Life Events!
The Biobank [Coming Soon!]
There may be a waiting period between the time of your registration and time of your sample collection. Although there is no guarantee that any given You + ME participant will be eligible to provide a biological sample, we will be sure to contact you should the opportunity become available!
Whether you contribute a sample or not, your participation in You + ME is meaningful! Every single person in our community plays a role in efforts to understand, diagnose and treat post-viral chronic conditions like ME/CFS!
We deeply value any health information you share with us. As such, we carefully consider the researchers we work with to ensure that only those with research proposals of the highest quality are given access to your sample. We will vet all requests to use samples with the You + ME Innovation Council, a group of patients and researchers committed to finding a cure.
Any researcher who wishes to do a research project using data and biosamples from You + ME must first submit an application to Solve M.E. with an outline of their credentials and research interests.
Each application will be reviewed by the You + ME Innovation Council.
Researchers who wish to work with biological samples will be held to more rigorous standards than those requesting access to data alone.
As part of our commitment to community values, we require researchers who use You + ME data to abide by open data standards, which includes a requirement to share both research methods and finds with the broader community.
No, you will not be able to choose which researchers use your data. However, you will soon be able to participate in the research process by posing your own research questions.
In upcoming months, we plan to build a forum that will allow participants to propose research questions that other community members can “upvote”. Forums like these will shape which research questions become experiments.
The privacy and security of your data is of paramount importance – You + ME takes the needed measures to protect information about you from loss, theft, misuse, unauthorized access, disclosure, alteration and destruction.
Before You + ME could be approved to operate, we went through a process in which our team shares information about You + ME’s processes for data collection and protection with an independent ethics committee. This Independent Review Board (IRB) had to approve our processes to ensure they were compliant and aligned with data privacy laws, and that there were no ethical issues that could put individuals at risk.
Data is securely stored in an encrypted mongoDB Atlas cloud database (https://www.mongodb.com/cloud/trust/compliance/hipaa). Personally-identifiable information is handled using processes compliant with industry practice, including use of encryption-at-rest when being stored in the Registry database. Data is transmitted from the Registry to the backend database using industry standard TLS/SSL encryption protocols.. We regularly backup the Registry database to decrease the serverrisk of data loss. Our disaster recovery system also maintains a full suite of security measures to protect backup data.
For additional information on security standards, please visit: https://docs.mongodb.com/manual/security/.