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.
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.
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?
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: 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?
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.
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.
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/
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/
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.
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
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.
