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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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You + M.E. (International ME/CFS Registry) Website Live!

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
You_ME_logo.png


Registries are foundational in understanding, treating, and curing diseases. This approach is desperately needed in ME/CFS. That’s why we’re proud to have created one for ME/CFS that will be accessible to all.

With the generous help of our partners and the community, we have built a data platform and symptom tracking mobile app that will help connect patients, healthy controls, clinicians, and scientific researchers across the world to help solve the mystery of this debilitating disease.

In the coming weeks, the You + M.E. platform and accompanying mobile app will be launched to a testing group and shortly after will be available to all participants. In the meantime, check out the You + M.E. website to learn more about the Registry and let us know what you think at registry@solvecfs.org

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Support this effort to bring a global data repository for ME/CFS. Please make a gift today.

Thank you,

sadie_signature_min.png

Sadie Whittaker, PhD
Chief Scientific Officer
Solve M.E.


P.S. Make sure to check out the You + M.E. Impact Tool, designed to create a visual way to communicate the impact of ME/CFS.
 

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
Thanks, ScottTriGuy!

Here's a follow-up announcement from the research team:


You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app.



So, what is a Registry anyway and why does it matter for ME/CFS?

A Registry is an organized system that allows us to collect large amounts of uniform data from individuals with a specific disease. The resulting large dataset will better enable researchers to identify causes and treatments by:

  • Yielding a deeper understanding of the disease
  • Helping identify subtypes
  • Facilitating the engagement of pharmaceutical companies
  • Speeding up clinical trials and parsing through the most effective treatments
  • Helping people with ME/CFS track symptoms day-to-day, making it easier to share that information with healthcare providers and loved ones and communicate the impact of ME/CFS
  • Supporting connectivity and collaboration, making researchers, patients, and healthy controls partners in progress in the fight against ME/CFS
You can learn more about You + M.E. here: http://go.solvecfs.org/e/192652/201...h=QB8fJZ8KDUHoEBSFNG7YIXqFRVVS5nTbS6m0GUNnCT4

Thank you for your support as we build a big data revolution for ME/CFS!



IuqgEgQQhRccObH3IyQydlpENsI3wNJXyxa_fu9K5rTVHvHg-Sdy5PzMhfhacq2m93sF-eZu701c7m_soOq7tHhQ3iMxPHKsaUK9LGXDXqWvOJtI9ioW8b3q6LHkeO_J1bH1=s0-d-e1-ft

Sadie Whittaker, PhD Allison Ramiller, MPH
Chief Scientific Officer Director of Research Programs
Solve M.E. Solve M.E.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks, ScottTriGuy!

Here's a follow-up announcement from the research team:


You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app.



So, what is a Registry anyway and why does it matter for ME/CFS?

A Registry is an organized system that allows us to collect large amounts of uniform data from individuals with a specific disease. The resulting large dataset will better enable researchers to identify causes and treatments by:

  • Yielding a deeper understanding of the disease
  • Helping identify subtypes
  • Facilitating the engagement of pharmaceutical companies
  • Speeding up clinical trials and parsing through the most effective treatments
  • Helping people with ME/CFS track symptoms day-to-day, making it easier to share that information with healthcare providers and loved ones and communicate the impact of ME/CFS
  • Supporting connectivity and collaboration, making researchers, patients, and healthy controls partners in progress in the fight against ME/CFS
You can learn more about You + M.E. here: http://go.solvecfs.org/e/192652/201...h=QB8fJZ8KDUHoEBSFNG7YIXqFRVVS5nTbS6m0GUNnCT4

Thank you for your support as we build a big data revolution for ME/CFS!



IuqgEgQQhRccObH3IyQydlpENsI3wNJXyxa_fu9K5rTVHvHg-Sdy5PzMhfhacq2m93sF-eZu701c7m_soOq7tHhQ3iMxPHKsaUK9LGXDXqWvOJtI9ioW8b3q6LHkeO_J1bH1=s0-d-e1-ft

Sadie Whittaker, PhD Allison Ramiller, MPH
Chief Scientific Officer Director of Research Programs
Solve M.E. Solve M.E.
Where does one go for registration help? My account didn't get verified and is insisting on doing so but wants a new code that there's no way to ask for. It won't let me create a new account either. There seems to be no way to ask for help.

Thank you.
 

wigglethemouse

Senior Member
Messages
776
Where does one go for registration help? My account didn't get verified and is insisting on doing so but wants a new code that there's no way to ask for. It won't let me create a new account either. There seems to be no way to ask for help.

Thank you.
@Learner1 In the contact section of their website they show the following
PATIENT REGISTRY CONTACT
Email at biobank@SolveCFS.org or call 704-364-0016 (office).
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
The You + ME registry is now published!
(as a pre-print)

You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases (Ramiller et al., 2021)
https://www.preprints.org/manuscript/202111.0478/v1

Excerpt:
Ramiller et al. 2021 said:
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, complex, heterogeneous disease that affects millions and lacks both diagnostics and treatments. Big data, or the collection of vast quantities of data that can be mined for information, has transformed the understanding of many complex illnesses like cancer (1,2) and multiple sclerosis (3,4), by dissecting heterogeneity, identifying subtypes, and enabling the development of personalized treatments.

It is possible that big data can reveal the same for ME/CFS. Solve M.E. developed and launched the You + ME Registry to collect longitudinal health data from people with ME/CFS, people with Long COVID (LC) and control volunteers using rigorous protocols designed to harmonize with other groups collecting data from similar groups of people.

The Registry is an invaluable resource because it integrates with a symptom tracking app, as well as a biorepository, to provide a robust and rich dataset that is available to qualified researchers. Accordingly, it facilitates collaboration that may ultimately uncover causes and help accelerate the development of therapies.
 
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