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.

 

[Emily Taylor]

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.

 

[Not dead yet!]

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.

OMG that was depressing. In an informative way, but I hadn't thought about the year long aspect.

 

[Emily Taylor]

OMG that was depressing. In an informative way, but I hadn't thought about the year long aspect.

Thanks, Not dead yet! It's actually a model we "borrowed" from the migraine diagnostic/disability tool which is used to track disability claims for folks with chronic migraines. It's heartbreaking to realize how much is lost to these diseases, but helpful data for individuals and researchers to recognize and treat what is lost.

 

[Mandalorian]

I dont see a mystery here , CFS = Environmental disease


Health is annihilated by exposure from various unhealthy toxicants, also EMF now days and nutrional deficiencys.


Ever hear the term Environmental disease ?

WHO | Almost a quarter of all disease caused by environmental exposure

www.who.int

I do really appreciate that you are trying to solve this.


Anyway.....by understanding the full line dynamics which really cause serious " cause and effects " to us an infact all living is important. We cant have healthy immunity if it has been altered by environmental toxicants & EMF .


I kinda feel like many researcher are chasing ghost, by looking DNA or bio markers and expect that it would give the answer . There are now billions of people, and also so much different toxic substances combined with EMF, how many dfferent variations there can be from all that ? Too many is my simple guess .

Basic requirements for health have not changed , when people think that all goes business as usuall in environment that has become like the enemy, have really lost it.

It's no wonder we cant protect our bodys anymore from pathogens as we should .


I would put the recources to get best possible methods to reverse bodys from toxic to clean + fix the depleted nutrional issues that really stems a lot from food industry .

 

[Mandalorian]

Tune in for change to come

 

[Mandalorian]

Yeeh going off topic i notice, okey if removed .

 

[Big ćoF]

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.

This is a great idea, but When will this website and app start working?