Join the Research Momentum with OMF’s StudyME

from email

 

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.

 

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

Cross posted with Trish.

 

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?

 

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

 

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.