Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

Solve M.E. Announces Launch of You + M.E. Registry and Biobank to Transform the Study of ME/CFS and Post-viral, Chronic Illnesses Likely Impacted by COVID-19
Jul 15, 2020

full article here
https://www.biospace.com/article/re...hronic-illnesses-likely-impacted-by-covid-19/

 

Merged thread

Solve M.E. webinar: You + M.E.: A Registry for the Whole ME/CFS Community, July 30th, 2020

The You + M.E. Registry and Biobank is a collection of patient-reported data and biosamples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome, or ME/CFS) and healthy controls. The goal of the You + M.E. Registry is to register individuals with ME/CFS and non-ME/CFS control participants and compile demographic and health information into a data bank that will further our understanding of ME/CFS.

In this upcoming webinar, we will introduce the newly launched You + M.E. Registry and Biobank. Our Chief Scientific Officer, Dr. Sadie Whittaker, and our new Solve M.E. CEO, Oved Amitay, will take a closer look at what the registry has to offer, and how to make the most of your You + M.E. experience!

Register here.

10:00am PT / 1:00pm ET / 6:00pm UK / 7:00pm EU

 

From an email from Solve.

We are thrilled to report that the You + M.E. Registry & Biobank has enrolled over 1,300 participants, including 1173 people with ME/CFS and 149 non-ME/CFS control volunteers!

In the medical community, we have seen firsthand the power of big data in solving the mysteries of medicine. Big data has transformed our understanding of many diseases, enabling us to characterize disease subtypes, and develop personalized therapies for serious illnesses.

When our team set out to develop the You + M.E. Registry and Biobank 2 years ago, we knew we were onto something big. But to do it right, we knew we had to start small - within our own community. To this end, we held 1:1 in-depth interviews, and integrated people with ME/CFS, caregivers, clinicians, and researchers into our design, development and testing.

Recently, we took this a step further by sending a Community Feedback Form to learn more about the You + M.E. experience. Here’s what we’ve learned :

1. There is a lot of enthusiasm in the community - within minutes of sending out the survey, over (50) Community Members filled out the survey! We’ve logged feedback from (95) people so far.
2. Over 75% of Community Members surveyed reported an overall You + M.E. satisfaction score of 7 or higher out of 10 (wahoo!)
3. Half of the Community Members surveyed downloaded our Symptom Tracking App, and of that group, 78.6% reported a score of 7 or higher out of 10.

One Community Member said :

“I am so pleased to have joined this app.
I don't feel so alone now or so out of control.
By logging how I feel, I am able to make more sense of my condition.
Thank you for all you are doing.” -- Person living with ME

 

https://twitter.com/user/status/1300871448576364545

 

Start of Twitter thread.

Code:

https://twitter.com/YouMeRegistry/status/1311693911736438786

https://twitter.com/user/status/1311693911736438786

 

Code:

https://twitter.com/YouMeRegistry/status/1314234148450709504

https://twitter.com/user/status/1314234148450709504

 

Latest email from Solve.

Register for Our December Webinar Now!
You + ME: A Registry for the Whole ME/CFS Community


After months of collaborative development with community members and researchers, we opened the You + ME Registry for enrollment in June 2020. You + ME is driven by a big vision — building a community of thousands contributing health information to create the largest dataset ever for ME/CFS research. Many research projects have come to a stop due to COVID19 stay-at-home orders and lab closures, but You + ME is completely online, turning each individual and their data into a research project incubator from the comfort and safety of home.

In this webinar, Solve M.E. Chief Scientific Officer Dr. Sadie Whittaker and CEO Oved Amitay take a closer look at what the registry has to offer, and how to make the most of your You + ME experience!

When:
Wednesday, December 16 at 10 am PT/1 pm ET

Register here.



You Make Our Webinars Possible!
Did you get helpful info from a Solve M.E. webinar? You’re not alone. Nearly 30,000 people have registered for or viewed one of our informational videos about ME/CFS in the last two years. Your gift makes all the difference in providing this open resource to the ME/CFS community.

We create as many as 10 webinars every year, each with timely research updates or targeted educational content valuable to patients, researchers, and health care providers.

You can watch all of our webinars here.

Producing them requires funding and resources. Please consider making a donation to Solve M.E. today to help us continue to provide the most accurate and up-to-date information about ME/CFS to the world at large!

 

Code:

https://twitter.com/YouMeRegistry/status/1318288344615444480

https://twitter.com/user/status/1318288344615444480

 

From an email

We’re thrilled to announce that enrollment in the You + ME Registry has reached 2,000 participants! This would not have been possible without the support of this amazing community. Together, you have not only contributed over 1 million data points that can help drive new research, but also actively engaged with us in the design and continued growth of this community resource.




Some of the things we’re most proud of from 2020 are:

• Reaching ambitious enrollment targets within six months of launch
• Partnering with organizations all over the world to initiate a global data collaborative
• Opening registrations for long COVID so we can better understand similarities and differences with ME/CFS

And we’re just getting started. We have lots of exciting plans for 2021 that we want you to be part of. If you haven’t signed up yet for this transformative research project, we need you! Register today and ask a friend or family member without ME/CFS to join too - controls are just as important.


Click here to learn more and sign up

 

Code:

https://twitter.com/PlzSolveCFS/status/1343618137938419712

https://twitter.com/user/status/1343618137938419712

 

Newly released pre-print

You + ME Registry: A Research Platform to Facilitate Clinical and Therapeutic Discoveries in ME/CFS and Related Diseases

Ramiller et al

Abstract
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.

Keywords
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Long COVID; data acquisition source; post-infectious; longitudinal cohort study; patient-powered

Open access full text
https://www.preprints.org/manuscript/202111.0478/v1

 

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform, 2022, Ramiller et al

ABSTRACT

Background:

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.

Objective:

To make ME/CFS and other post-infection diseases widely understood, diagnosable, and treatable.

Methods:

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.

Results:

The Registry now has over 4,200 geographically-diverse participants (3,033 people with ME/CFS, 833 post-COVID, and 473 control volunteers) with an average of 72 new people registered every week. It has qualified as "great" using a Net Promotor Score, indicating registrants are likely to recommend to a friend. Analyses of collected data are currently underway and preliminary findings are expected in the near future.

Conclusions:

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.

Open access, https://preprints.jmir.org/preprint/36798/

 

70 people a week = 3500 people a year registering. Good to see this project is gaining scale.

It also shows the scale of what Decode ME is attempting: we want to recruit 25,000 people in short order.

We have plans and a big community of people who are enthusiastic about this.

But we’re going to need a huge amount of support from people when we launch.. (Moderators, feel free to move this advert if you feel it’s necessary) .