Comparison of ME/CFS and Long COVID-19 Patients

  • End date
    May 1, 2025
  • participants needed
  • sponsor
    Solve ME/CFS Initiative
Updated on 16 April 2021


The purpose of the You + ME Registry and Biobank is to collect clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers to improve understanding, diagnosis and treatment of these diseases.


The You + ME Registry and Biobank is a collection of clinical and patient-reported data and biological samples (e.g. blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers. The patient registry collates demographic and real-world, longitudinal symptom, patient-reported outcomes, and treatment data from a global cohort into a centralized repository. The Registry will also be linked to a biobank which is a place that stores tissues, blood or other samples from participants. The combination of data and biological samples will be made available to researchers so we can: (1) improve our understanding of the natural history, epidemiology, pathogenesis, resilience/susceptibility factors, disease subsets, and treatment of ME/CFS and long-COVID using a standardized set of demographic and longitudinal data; (2) build an infrastructure and resource to support a range of future research into these diseases; (3) increase opportunities for collaboration between patients, providers, researchers, and industry.

Anyone 18 years of age and older is invited to sign up. After creating a profile and completing an informed consent via an online portal, participants fill out a series of surveys, including medical history, co-occurring conditions, symptoms, quality of life, functional status, and treatments. Participants receive email reminders to complete follow-up surveys to provide researchers with information about their health over time.

The Registry also includes a mobile tracking app co-created with the community that allows participants to monitor at minimum five core symptoms of fatigue, brain fog, unrefreshing sleep, and orthostatic intolerance (on a scale of 0: symptom absent - 4: very severe) as well as any additional symptoms of their choosing, life factors, and activity. Individuals can also capture data in narrative form using a journaling function. Participants are encouraged to capture data every 3 days if possible, but can track as often as daily.

Registry data is stored in a secure, encrypted database. Data is anonymized before being made available on a secure platform for research. Biosamples collected from participants are labeled with a coded number to protect their privacy and confidentiality.

This project is supported by Solve ME/CFS Initiative. You can learn more and sign up at

Clinical Study IdentifierNCT04806620
SponsorSolve ME/CFS Initiative
Last Modified on16 April 2021


Yes No Not Sure

Inclusion Criteria

Patients with ME/CFS
Those without ME/CFS
Patients with long-COVID
Patients with COVID who recovered

Exclusion Criteria

Those who never had COVID
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

You are contacting

Investigator Avatar

Primary Contact



Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

Learn more

If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

Learn more

Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

Learn more

Similar trials to consider


Not finding what you're looking for?

Every year hundreds of thousands of volunteers step forward to participate in research. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.

Sign up as volunteer

user name

Added by • 



Reply by • Private

Lorem ipsum dolor sit amet consectetur, adipisicing elit. Ipsa vel nobis alias. Quae eveniet velit voluptate quo doloribus maxime et dicta in sequi, corporis quod. Ea, dolor eius? Dolore, vel!

  The passcode will expire in None.

No annotations made yet

Add a private note
  • abc Select a piece of text from the left.
  • Add notes visible only to you.
  • Send it to people through a passcode protected link.
Add a private note