Stanford: Are you a local patient?

JaimeS

Senior Member
Messages
3,402
Likes
12,189
Location
Silicon Valley, CA
We don't have a start date yet, @humanrising, but I imagine it will be relatively soon. I was asked to start reaching out just last week. I anticipate by June we will be doing this in a more official capacity. :)

Send me a private message so that I know you have volunteered? :D
 
Messages
1,130
Likes
4,088
We don't have a start date yet, @humanrising, but I imagine it will be relatively soon. I was asked to start reaching out just last week. I anticipate by June we will be doing this in a more official capacity. :)

Send me a private message so that I know you have volunteered? :D
June would be perfect timing. Maybe someone could announce that volunteeers are needed at the upcoming June 2nd ME Awareness Rally in Sacramento?
 

JaimeS

Senior Member
Messages
3,402
Likes
12,189
Location
Silicon Valley, CA
Stopped in the middle of a convo with staff about this very topic to reply to you. ;)

I promise we haven't forgotten about you -- our redone research consent form was approved, so it's a simple matter of dotting the Ts and crossing the Is ... or vice-versa... :confused: ... before we can start scheduling folks.

Please remember that, if possible, we would love for you to come in more than once so that we can get longitudinal data or test the same people on various measures. If you can't, that's cool, but if you can, that would be amazing.

I can't anticipate the future, but without another golem in the gears, I will be contacting you very soon. Thanks for your patience, everyone!
 

Webdog

Senior Member
Messages
1,090
Likes
3,515
Location
Planet 9 via Interplanetary Overlay Network
Stopped in the middle of a convo with staff about this very topic to reply to you. ;)

I promise we haven't forgotten about you -- our redone research consent form was approved, so it's a simple matter of dotting the Ts and crossing the Is ... or vice-versa... :confused: ... before we can start scheduling folks.

Please remember that, if possible, we would love for you to come in more than once so that we can get longitudinal data or test the same people on various measures. If you can't, that's cool, but if you can, that would be amazing.

I can't anticipate the future, but without another golem in the gears, I will be contacting you very soon. Thanks for your patience, everyone!
Thanks @JaimeS. Many of us are itching to help in any way we can! :)
 

JaimeS

Senior Member
Messages
3,402
Likes
12,189
Location
Silicon Valley, CA
Ready! Start checking your inboxes here, and if you don't see anything there by the end of today (it's about 10:30am where I am) then please PM me and I will send you some information.

[Edit: Done! If you don't have a message in your inbox from me and you'd still like to participate, please PM me!]
 
Last edited:

Sushi

Moderation Resource Albuquerque
Messages
17,060
Likes
26,415
Location
Albuquerque
Phoenix Rising has been doing increasingly weird things over the past few weeks, and it's not letting me start one with you!
Hi JaimeS. You couldn't start a Conversation with @mikepmichaelson because he is a new member--but you should be able to now. PR is having some conflict with Chrome. If you use Chrome, try another browser and see if that helps.
 
Messages
4
Likes
5
Greetings, everyone! I am looking to BEGIN to get a group of patients who are local to the Stanford / Palo Alto area for research being done by Ron Davis's team. We are looking for patients with a diagnosis of ME/CFS of various levels of severity. Unfortunately, we are only recruiting adults at this time, so the patient must be 18 or older; otherwise we are recruiting all ages / genders.

We are looking to make long-term connections where people might be willing to come more than once, over time. If you have family members willing to sometimes donate who are healthy, that would be amazing; one of our researchers is doing a family study.

If you are not comfortable letting the entire internet know where you live (!) feel free to PM me, but I will give some additional information here.

According to our IRB, we cannot communicate our findings directly to you, but we can communicate anything actionable to your physician. E.g. if we do metabolomics and see your Vitamin D is very low, we will inform a medical practitioner you designate.

Jaime
Hello. I am interested. I can’t figure out how to PM you (might be user error or brain fog).
 
Messages
312
Likes
734
Hello. I am interested. I can’t figure out how to PM you (might be user error or brain fog).
I think you need 10 messages to be able to PM (start a conversation).

For anyone local to the San Francisco Bay Area wanting to participate in the OMF research studies @Janet Dafoe (Rose49) (Ron Davis's partner) posted HERE on how to enquire about participation

Also, MEAction lists HERE other research studies such as the ones at Montoya's clinic. Montoya's research is separate from the OMF research.

Hope that helps.
 

JaimeS

Senior Member
Messages
3,402
Likes
12,189
Location
Silicon Valley, CA
If you would like to get enrolled in Ron's studies, you can email wilhelmy@stanford.edu for more. Julie is really, really busy so let me know if you don't hear back right away and I'll let her know in person. I also know that they're getting someone to do recruitment soon, so hopefully soon she will be able to forward it to that person. :)
 
Messages
16
Likes
13
I am interested in participating in studies. I am in San Bernardino County, was diagnosed end of May this year. I have no clue how it works...does my insurance have to cover costs? I have local medicaid.