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

[Emily Taylor]

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

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

Thank you,

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.

 

[ScottTriGuy]

Awesome @Emily Taylor - this has great potential.

 

[Emily Taylor]

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!

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

 

[casino_4]

This sounds really promising. Shouldn't this post be pinned or something so a lot of people see it and sign up?

 

[andyguitar]

Awesome @Emily Taylor - this has great potential.

Yes it does. Lets hope it gets used by all that are able to contribute. Some and to those who came up with the idea.

 

[Learner1]

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!

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]

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).

 

[Learner1]

Thanks, I'll try again. I've sent 2 previous messages and no action has been taken.

 

[Emily Taylor]

you can also email the registry team directly at:
registry@solvecfs.org

 

[Pyrrhus]

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:

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.

 

[Pyrrhus]

Have you signed up yet?

https://twitter.com/i/web/status/1460654187642081290