What is You + ME?
You + ME Registry and Biobank is a global community of people sharing health information that will further our understanding of ME/CFS and long-COVID.
What is a patient registry?
A patient registry is a place where medical information, family health history and other related information is collected from patients and stored for medical research. Patient registries are used extensively in healthcare to help medical professionals better understand why and how a disease develops so they are able to conduct research that is most relevant to the needs of the patient population.
Why is the registry called You + ME?
You + ME represents the community we hope to build. It represents You + Your Disease; You + Your Healthy Control; You + thousands of others who contribute their data; You + the network of researchers who will use the data to better characterize this illness. Together, we can solve complex illnesses like ME/CFS and long-COVID.
How do patient registries like You + ME inform research?
Patient registries facilitate research by enabling participants to share their health experiences with researchers and medical professionals. By completing health surveys, you are giving researchers a richer understanding of complex diseases like ME/CFS and long-COVID. You + ME also includes a biobank, which is a place that stores samples such as blood or tissue from participants.
What does it mean to participate?
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 and you will be taken through what we call 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 and medications, among others!
In addition, people with ME/CFS and/or those who identify as COVID longhaulers can download the You + ME Mobile App to track symptoms, general well-being and other life events as often as daily. This ongoing tracking allows for a more complete picture of the disease and 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).
How can I join You + ME?
The Registry is currently open to participants age 18+ who live in the United States. In upcoming months, we will be launching You + ME | Teen for participants between the ages of 13-17, and You + ME | International for our global community.
I am a caregiver. Can I help someone with ME/CFS and/or long-COVID enter their Data?
If you are a caregiver, please know that you can work together with your loved one to complete surveys in You + ME or enter tracking data into the mobile app. Just make sure that you only input information about that person in their profile!
I’m healthy – why should I join?
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 in question.
I don’t live in the United States. Can I join?
Currently, You + ME is in an extended beta testing period with a group in the United States. We will be expanding our community globally soon!
Help! I can’t find my verification code.
At first, your inbox might not recognize an email from us, and mistakenly direct one of our messages to the ‘Junk’ Folder. It happens! If you don’t see it there, feel free to reach out to email@example.com for some assistance.
I have a condition that is not listed. Can I still add it?
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.
I have a medication, supplement or treatment that is not listed. Can I still add it?
Absolutely! To add a custom treatment, simply go to “My Treatments” and click on the “Add Treatment” button. Once you are there, start typing the treatment name into the search bar. At first, you will see an auto-populated list of medications. If the one you use is not listed there, that’s alright! Just keep typing it out and continue with the rest of the form as you would usually.
How can I edit my conditions or treatments?
The best way to answer this question is, it depends! To ensure that your data can contribute to research studies, some fields will be ‘locked’ after you first enter them. Other fields, on the other hand, can be edited freely. If you would like to update a condition or treatment that has become locked, feel free to reach out to firstname.lastname@example.org for assistance!
Can I review my survey responses after the survey has been completed?
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:
1. Log into your account
2. Click on ‘My Surveys’
3. Select the Survey you you interested in to view a summary of your responses
How do I download the app?
The You + ME Tracking App can be downloaded from the Apple Store, or from the Google Play Store. After downloading, simply type in the email and password you used to create your You + ME profile in the User Portal.
I don’t have a smartphone or tablet. How can I participate?
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 email@example.com and we can help collect your data over the phone.
How often should I track my symptoms?
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.
How do I add a custom symptom to my tracking flow?
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!
How do I add a custom Life Event to my tracking flow?
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!
How do I edit/remove a custom symptom?
If you’d like to edit or remove a custom symptom, no problem! Simply tap on “Add New” at the top right hand corner of your Symptoms Tab. This will take you to the Symptoms list. Once you’re there, start typing in the name of the symptom you would like to edit or remove. In case you forgot the exact name, you also have the option of scrolling down until you find it! At the moment, the best way to edit a symptom is by removing it and creating a new one. To remove a symptom from your list, just tap the green bar! Once it turns grey, the symptom has been removed from your custom list of Symptoms.
How do I edit/remove a custom Life Event?
If you’d like to edit or remove a custom Life Event, no worries! Simply tap on “Add New” at the top right hand corner of your Life Events Tab. This will take you to the Symptoms list. Once you’re there, start typing in the name of the Life Event you would like to edit or remove. In case you forgot the exact name, you also have the option of scrolling down until you find it! At the moment, the best way to edit a Life Event is by removing it and creating a new one. To remove the symptom from your list, just tap the green bar! Once it turns grey, the Life Event has been removed from your custom list of Life Events.
The Biobank [Coming Soon!]
How are samples collected?
After reading and agreeing to our Informed Consent for Data Collection, a collection kit and instructions will be sent to your preferred address.
The Collection Kit will contain barcoded specimen collection symptoms appropriate for the sample collected (e.g. tubes, dried bloodspot collection cards). There will also be a set of instructions included that will show you how to collect, label, and ship your sample. Postage is included!
If you like, you also have the option of dropping your Collection Kit at a nearby lab (e.g. a Quest Diagnostics facility). If you cannot travel to a collection site, we will arrange for someone to come to your home to collect the sample.
Do I have to pay for collection?
Absolutely not! You + ME covers any and all costs related to biosample collection.
When will my biosample be collected?
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!
How are my samples used?
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.
How are researchers vetted?
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.
Can I choose which researchers can access my data?
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.
Will I know if my data leads to a discovery?
We consider each community member as a critical stakeholder in the research process. You will always know which research projects your data is contributing to, as well as any results that arise out of those studies.
Will my data be used to give me specific medical advice?
No, your data will not be used to give medical advice.
You will, however, be able to share your data with your care team to show them your health status in between office visits.
How will my data be protected?
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/.
Who can see my data?
Only researchers who are approved by the You + ME Innovation Council will be able to see your anonymous, de-identified data. The data is anonymized so that no one who looks at your data will be able to trace the data back to you.
The Registry Coordinators at Solve M.E. will also be able to see your data. They are the only people who will have the ability to see data that is not anonymous. These individuals have been thoroughly vetted and trained to work with health information.
Can I change my mind and remove my data later?
Your participation is voluntary, which includes the ability to withdraw from You + ME at any time. This means that we will not collect any further information from you.
Existing anonymized data that have already been collected might still be used, as it is not always possible to separate your anonymized data from other anonymized data. However, we will destroy the key identifier that links your personal information to your data.