Join the Research Momentum with OMF’s StudyME

[Sly Saint]

from email

Join the Research Momentum with

OMF’s StudyME


A Patient-Powered Participant Registry

To help find a CURE faster.


Do you want to help speed up the research process? Now you can!


We have just launched OMF’s StudyME, a participant registry powered by the incredible StudyPages platform, to connect those who want to participate in research studies to the researchers who conduct them.


Stand up and be counted! Help us enroll 100,000 participants, comprising of individuals afflicted with ME/CFS, Long COVID, Fibromyalgia and related post-infection illnesses, as well as healthy volunteers. OMF’s StudyME makes recruiting faster, promotes global collaboration and will help make it easier for researchers to get grants with a large and diverse pool of participants.


SIGN UP NOW!


Linda Tannenbaum, OMF's Founder & CEO/President shares why signing up to OMF's StudyME is a win-win:
Stand Up and Be Counted! Join StudyME - YouTube

And today, May 1, 2023, marks the first day of May Momentum, an annual fundraising initiative by OMF to raise awareness and drive research forward. There’s no better time to support May Momentum by signing up for StudyME today.


Joining OMF’s StudyME is super quick and easy. It only takes a few minutes. All you have to do is fill in your contact information and what kind of studies you're interested in. That's it!


When you join OMF’s StudyME, you will be sent email notifications containing participant opportunities as they come up, such as surveys for collecting crucial data, requests for study samples, and even the possibly to participate in treatment trials when available in your area.


Rest assured; your email address will not be shared. By clicking on the opportunities to the studies that you are interested in, you can learn more about them and directly contact the research team involved in that particular study. We merely post opportunities to accelerate the recruitment process.


So, if you want to help shave years off the time it takes to find a cure, sign up for OMF’s StudyME today and join this movement together!


Contact StudyME@omf.ngo with questions.

On the first day of #MayMomentum, we invite you to make a difference by donating. Your gift will build momentum by supporting vital research efforts and medical education to improve the lives of millions of people who suffer from ME/CFS, Long COVID, and related diseases. Every donation counts. We appreciate your support in our mission to advance research and find a cure faster!

 

[rvallee]

Well, it's pretty easy to sign up. This is not a patient registry, maybe that will come later because it is so badly needed, so the questions are rather simple, mostly simply ask about whether you are interested in participating in a study, how far, and for what research purpose (PEM, brain fog, etc.). Takes 3-5 minutes.

I really hope we can have a patient registry soon. It's such a major missing piece, along with longitudinal and in-depth studies with multiple validated cohorts. But it's also clear that recruitment for studies is a huge problem that can be massively streamlined this way.

 

[Trish]

Solve have a patient registry in the USA.

 

[Andy]

So it will duplicate Solve's registry then, as far as I can see .

Cross posted with Trish.

 

[Wyva]

The OMF one accepts people from any country, so I signed up too, just in case. The Solve Registry is only for people living in the US but the website says they are planning an international one too.

 

[Hutan]

The Solve Registry is only for people living in the US but the website says they are planning an international one too.

The Solve You and ME Registry also accepts people in Australia.

 

[rvallee]

Solve have a patient registry in the USA.

Yeah, and I seem to remember it was supposed to expand beyond, but that never happened. I actually forgot about it. Haven't seen anything about it at all. Is it even active/used for something?

 

[Hutan]

This is not a patient registry, maybe that will come later because it is so badly needed, so the questions are rather simple, mostly simply ask about whether you are interested in participating in a study, how far, and for what research purpose (PEM, brain fog, etc.).

Yes. I'd like to see a bit more about data security. The link for Privacy Policy goes to Yuzu labs. Yuzu seems to be a small San Francisco based company - perhaps only 2 employees? They run Study Pages and promise to keep data secure, but their customer is, in this case, OMF. Yuzu says:

For purposes of the GDPR, the Customer is the controller of Customer Data. Yuzu Labs is not the controller of and does not have ownership of Customer Data. Please direct any questions regarding Customer Data to the Customer for which you work or which collected your information using a Yuzu Labs platform or application.

So, it would be good to see a privacy policy from OMF too, as you are giving them control of your data when you sign up. That could be fine if it's just an email and an expression of interest in research trials. But, perhaps the data collected will get more detailed. Maybe that is covered somewhere?

 

[Hutan]

Yeah, and I seem to remember it was supposed to expand beyond, but that never happened. I actually forgot about it. Haven't seen anything about it at all. Is it even active/used for something?

Every so often I get an email to fill out an update, there's been maybe 8 or 9 updates. So, the information is going in. I'm not sure how much is coming out, but I guess that takes a bit of time.

 

[Sid]

Yes. I'd like to see a bit more about data security.

That was the first concern that came to mind as I read the announcement.

 

[ME/CFS Skeptic]

Not sure if it is a good idea to let patients decide which topic of ME/CFS studies they would like to participate in. This will only increase selection bias and provides little benefit. Patients might think: "I don't have symptom X so I'm not interested in participating in those studies" etc.

 

[Dolphin]

From Cort Johnson:

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research

We all know what the way out of diseases like ME/CFS, fibromyalgia, and long COVID is - it's more more research! Research studies, though, require participants, and finding people to participate in them can be one of the more costly and burdensome parts of an already very expensive process.

The Open Medicine Foundation, though, has found a way called StudyME to cut down those costs and accelerate and improve research studies by zinging people with these diseases to the researchers who are studying them. It's brilliant!

Want to make a difference with these illnesses? All it takes is about 5 minutes of your time. Check it out in

Study ME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research

https://www.healthrising.org/blog/2023/09/23/study-me-open-medicine-foundation/

https://twitter.com/user/status/1706428458379669866

https://twitter.com/user/status/1707018945650168207

 

[mango]

Excellent blog post by @MittEremltage, in Swedish:

Bra utformade studier är viktigare än register
https://mitteremitage.wordpress.com/2024/01/11/bra-utformade-studier-ar-viktigare-an-register/

Well-designed studies are more important than registers

In a post on its website (and on social media), the National Association for ME Patients (RME) encourages members and others to join a research registry run by the Open Medicine Foundation (OMF). By registering, as a potential participant, they believe that they can accelerate Swedish research on ME and contribute to finding a cure for the disease faster.

The linked OMF information claims that the registry will contribute to more attention to ME, that research will be faster, higher quality, increased funding, reduced error rate, greater credibility and provide a stronger community.

Extremely strong claims that I find it difficult to see as anything other than exaggerated sales propaganda.

A patient register will not revolutionise research. However, well-designed, high-quality studies will. Research that studies the right things. More money for the right kind of research could certainly speed up a cure, but it also means that patients need to start refusing to participate in studies with the wrong focus, because money is limited. Patients throwing themselves into different types of studies in blind desperation means increased risks. And it gives unprofessional researchers with fraudulent motives the opportunity to fill their studies and, by extension, get more opportunities for research funding.

Now, you might think that this is a registry supported by the RME and OMF and that it must therefore be a safe and good quality study.

Nope.

OMF disclaims all responsibility (disclaimer).

"These studies may be conducted by third parties (like universities or doctors) that are not affiliated with nor funded by OMF as well as OMF funded studies. The safety and scientific validity of each study is the sole responsibility of the study sponsor and investigators. The listing of a study does not imply that it has been evaluated, verified, or endorsed by OMF."

Thus, the studies that will be offered to those who are registered are not necessarily something that OMF supports or has quality assured. It is entirely up to the participant to decide whether the research is good and safe in the same way as if you are not included in any register. Based on what is stated in the disclaimer, it seems important to understand how OMF selects which researchers, universities and doctors can access the register of test subjects.

However, I can't find any information about this on their website, even though it is something that will be crucial for which studies the people in the register will be offered to participate in.

The problems with ideology, ethics, methodology and risk assessment that we have seen for a long time in ME research will not disappear just because researchers find it easier to recruit patients to their studies, which is the purpose of the registry. And the current registry will unfortunately not mean that subjects in ME research will be covered by greater protection. To some extent, the feeling of false security it may give to think that OMF or RME backs this could actually make the situation even more vulnerable.

Rather than an uncritical promotion of the OMF's register, I would have liked the patients' association to see it as its task to analyse the science regardless of whether there was a register or not. People with limited capacity need help to find out if the studies we are offered to participate in make sense and have the necessary authorisations. We also need easily accessible and customised information on how to assess whether a study is safe and how to understand what is a good research method. And we would need regular discussions on ME and research ethics to expose unethical actors.

This could really reduce our vulnerability and increase the safety of those who want to participate in research.

 

[Kitty]

Rather than an uncritical promotion of the OMF's register, I would have liked the patients' association to see it as its task to analyse the science regardless of whether there was a register or not. People with limited capacity need help to find out if the studies we are offered to participate in make sense and have the necessary authorisations. We also need easily accessible and customised information on how to assess whether a study is safe and how to understand what is a good research method.

Those are good points—they're also good arguments for much more patient participation in study designs.

A registry won't solve the access problems either. Travelling for an hour is difficult for most pwME, and unfeasible for some. It's a major challenge in a country like Britain, but the distances involved in crossing the USA, Canada, South America, and Australia are almost comical.

 

[Dolphin]

Open Medicine Foundation:

Let’s celebrate! We are thrilled to share a monumental milestone with you: OMF StudyME Registry has now surpassed 10,000 participants!


In April 2023, we proudly launched OMF StudyME, a participant registry powered by StudyPages. This innovative recruitment tool was created to bridge the gap between individuals living with ME/CFS, Long COVID, and related diseases, and the researchers dedicated to understanding and finding effective treatments for these diseases.


Today, we have over 10,000 participants, a testament to the collective effort and commitment of our community. This achievement addresses one of the most common challenges researchers face: finding participants for their studies. OMF StudyME Registry was designed to address this challenge by providing a free global participant registry that connects researchers with individuals eager to contribute to research on ME/CFS, Long COVID, and related diseases.


This incredible achievement wouldn’t have been possible without the support and dedication of our community. If you haven't already done so, by signing up, you have the power to help researchers find answers for ME/CFS and Long COVID. The process is easy and takes less than five minutes.


Join us in making a difference:

Sign up today and be a part of the solution!


Join StudyME

Key Insights About StudyME


OMF StudyME has registered over 10,000 participants across 61 countries, highlighting the global urgency for research in this field.


We have already helped recruit for ten studies at:

· Stanford University

· Bateman Horne Center

· Scripps Research

· Autoimmune Registry

· Mt Sinai

· Nova Southeastern University

· Vassar College

The demographic data reveals a pronounced sex disparity with a notable 5:1 ratio of female to male participants, primarily aged 25 - 55.


Preliminary insights from the registry highlight the profound impacts of these conditions on everyday life. Participants have indicated that they are interested in research in the following areas:

· Impairment in carrying out everyday activities (87%)

· Post-exertional malaise (85%)

· Cognitive impairment or brain fog (81%)

· Unrefreshing sleep (77%)

· Exercise intolerance (76%)

Thank you for your continued support and commitment to advancing research for ME/CFS and Long COVID, and related diseases.


With gratitude,

Team OMF

https://twitter.com/user/status/1833942586035191972

 

[bobbler]

Well, it's pretty easy to sign up. This is not a patient registry, maybe that will come later because it is so badly needed, so the questions are rather simple, mostly simply ask about whether you are interested in participating in a study, how far, and for what research purpose (PEM, brain fog, etc.). Takes 3-5 minutes.

I really hope we can have a patient registry soon. It's such a major missing piece, along with longitudinal and in-depth studies with multiple validated cohorts. But it's also clear that recruitment for studies is a huge problem that can be massively streamlined this way.

To feel that you don’t disappear when you get more ill , like the more ill something makes you the better for the person who did it because ‘noone will believe you anything can be that bad’

and I’d appreciate it allowing patients to add what they see as their significant events medical history because ours all get rewritten

that in itself for medicine

but just as the relief to know you existed

people don’t know how bad what’s done to us is . They take our health with choosing not to help, our relationship and current place in world with misinformation, then who we are with lies from personality tosh that shouldn’t be allowed to be done and is just abuse, then rewrite our history, then come for our past events we thought could never be taken from us as people saw us for ten years doing that job. But they take that too and people then think whatever line they feed themselves or get fed enough times to see that differently.

at least other illnesses you might lose all but you don’t get them coming back to erase you so you were never more than apparently an idiot who misbehaved. Having tgat stuck on you whilst you can’t defend it and you can have a future us one of the biggest violations I think a human being can endure

then you think if you die it’s not going to be honestly reported but twisted into ‘sad but when people are that mentally x then you can only help so much’ so anything done wrong there becomes cover-up-able and you realise how vulnerable you are as no one will notice.

so a registry is huge.

but security would have to be so so good due to the risks for us all

weird human psychology is they have to see it to prove it yet if you do then you’ve forced yourself to do more than you can by their presence and they don’t behave anyway and just wanted to argue with you.