NIH Intramural me/cfs study questions

[Thegriz]

I was accepted to the NIH Intramural me/cfs study.
I'm really looking forward to participating to hopefully contribute towards science of this horrible illness. I hope my body will be able to make it through the whole process!

Wanted to open up a thread to see if anyone had any questions they think I should ask while there?

Also if any other participants had tips for the process of flying and going through the study that would be much appreciated!

 

[wigglethemouse]

Some more info on s4me if you haven't seen it yet. I think Brian Vastag also posted about the study here on PR but I can't remember his username here. Maybe someone else will/
https://www.s4me.info/threads/the-n...wsletter-of-the-solve-me-cfs-initiative.9083/

https://www.s4me.info/threads/the-nih-study-needs-patients-from-brian-vastag.2980/

Good luck!

 

[wigglethemouse]

I assume you have also seen this article on Health Rising. If I remember right a participant answered some questions in the comments. Oh found it - the person is named Sanna if you click through to the Simmaron article
https://www.healthrising.org/blog/2019/03/23/avindra-nath-ninds-nih-chronic-fatigue-study/

 

[wigglethemouse]

I think Brian Vastag also posted about the study here on PR but I can't remember his username here.

Found it. Here is @viggster thread about the Intramural study.
https://forums.phoenixrising.me/threads/nih-still-needs-patients.58263/

 

[Thegriz]

Thanks thats all great info!

 

[Rooney]

Using the wheelchair service that all airlines provide is a MUST. I set this up ahead of time. They'll have an attendant there when you land. Bring a can to fill with water after going through security.
Thanks for participating!

 

[Zenzan222]

Using the wheelchair service that all airlines provide is a MUST. I set this up ahead of time. They'll have an attendant there when you land. Bring a can to fill with water after going through security.
Thanks for participating!

Good advice. I’m going out to participate next month, and I went ahead and got the TSA Precheck as well, hoping that might further reduce any airport meltdown.

 

[Zenzan222]

@Thegriz how was your experience in Bethesda? Any words of wisdom for those of us heading there soon?