What big data analysis do we need for ME/CFS?

[RiverJewel]

Hi all,

I'm new to the forum, have been sick for a couple of years, diagnosed 6 months ago (ME/CFS+MCAS+POTS+hEDS).

I'm also a data scientist with a background in basic and clinical research and would like to use my skills to help tackle this condition we are facing. However, I don't have enough knowledge of the research or the field to really understand where analysis could be most effective.
This community has an amazing wealth of shared knowledge and I wanted to ask the collective mind for ideas.

Which pressing questions could be addressed with big data?

One idea I had is to administer a large scale survey asking patients questions regarding symptoms, comorbidities, treatments etc. This will show trends and clusters in the disorder and identify the most effective treatments. Something like this might have already happened, I don't know the literature well.

Any other ideas and thoughts?

 

[wigglethemouse]

If you have the necessary skills you could ask the Open Medicine Foundation if there is a way you can help. e.g. Contribute to the analyzing patient data study. Contact details are at the bottom of their web page
https://www.omf.ngo/2018/02/21/analyzing-patient-data-study-aps/

SolveME are developing an App to collect data for later analysis. Maybe you can volunteer on that project. Q&A describing the project here
https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/

Both those organisations have HQ's in SoCal and OMF have a big project at Stanford under Ron Davis.

 

[RiverJewel]

Thank you for these pointers @wigglethemouse I'll check it out

 

[MastBCrazy]

I miss HealClick et al

 

[RiverJewel]

I miss HealClick et al

I had to look that up. Also, cool nickname

 

[PatJ]

@mariovitali has been working with machine based learning in his CFS/ME research and would probably be interested in joining this discussion.

 

[mariovitali]

@PatJ

Thank you for the mention.


@RiverJewel i am happy to share with you as much as i can. In a nutshell i started logging my symptoms in 2011 for a total of 434 days then used Classification Analysis to identify Good days vs Bad days when it comes to symptoms.

In 2012 i started implementing my own software framework using Natural Language Processing to analyze PUBMED abstracts related to ME/CFS medical topics and then using Network Analysis algorithms to identify important topics on the Network of associations of these medical topics (currently 15.8 million abstracts are analyzed).

I am also a beta tester for the SolveME app that @wigglethemouse mentioned and provide them with comments and ideas on what could be logged and subsequently analyzed.

Please feel free to PM me to discuss further.

 

[RiverJewel]

@mariovitali thank you! These sound really interesting. I'll PM you.

FYI I'm helping @Hip with a survey on CCI here