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Stanford Brain MRI and Immune Profiling Chronic Fatigue Syndrome (CFS) Study

Dolphin

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From: https://cfsme-registry.info


I spoke with the coordinator for this study, Tullia Lieb, and you can be from any location in the world to participate.


Brain MRI and Immune Profiling Chronic Fatigue Syndrome (CFS) Study





  • Do you suspect that you have CFS?
  • Are you between the ages of 18-60?
  • Are you right handed?
Participation in the study involves:
  • 20-minute phone screening interview
  • Online questionnaires including psychiatric evaluation
    >> Study Visit 1: Blood test and cognitive assessment
    >> Study Visit 2: Brain MRI
Patients can be compensated $150.00 USD upon completion of the study for their time and transportation.



If you are interested in participating or have any questions, please contact the study coordinator at tlieb@stanford.edu or (650) 723-8126.
 

alex3619

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I was about to look into that, but I'm a lefty. Never been called a confound before :wide-eyed:
Well here is something to confound even me. I am right handed, but I do many things left handed due to muscle damage (presumably ME related) on my right arm ... I simply did too much. So am I right handed, or left handed? What impact would that have on the brain's handedness?
 

62milestogojoe

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Hi Dolphin, thanks for the information. I underwent MRI scan to rule out CVA during the 4 months of eliminatory testing prior to diagnosis with ME. Nothing showed up.

At Osaka university, PET scanning showed revelatory results with everybody scanned with ME showing areas of brain inflammation and none of the healthy controls. Just a thought but I think PET scanning is the way to go.
 

Dolphin

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Hi Dolphin, thanks for the information. I underwent MRI scan to rule out CVA during the 4 months of eliminatory testing prior to diagnosis with ME. Nothing showed up.
I am no expert but believe there are different ways to do an MRI so your null result may not translate to a null result in this study.
 

62milestogojoe

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1gooddog

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Olympic Peninsula, WA
I am 70, with cfs and I have a long history that bears researching. I grew up in SW Iowa on home grown food and clean meats. I lived near and visited several rivers, such as Missouri. We had chickens and our own eggs. I had every childhood disease and vaccination.

I grew up on a farm. There are lung disorders from working in chicken house and on river banks. I cleaned horse stalls and delivered baby pigs.

I had glandular fever in 4th gr. I had mono at 19. Moved to a small city in Iowa. After high school we moved to Seattle, then back to IA. Later NE. I had the original series of polio vaccine. Later the sugar cube method. I have had a tendency to get strep in many areas of my body.

I have had erisipilus.
My lifelong experiences cover a lot of territory.

I refuse to reveal righty or lefty. I have an innie What does it matter

I have had all types of mris in the past year, and past 20 yrs.
 
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i have been working with them to schedule the exam and scan but it's been really difficult.

initially, their scheduler jumped the gun and scheduled some dates when i was actually trying to see what they had available. then, when i asked for different dates, they didn't reply for a couple of days. i asked them to call me so we could do it over the phone and instead they kept emailing me and then the schedule would fill up before i could confirm - and then, at the end, it turned out that the imaging person is out on the day they were trying to schedule anyways. sigh. so, still not scheduled, waiting for them to offer more dates.

also, emails and calls to the study coordinator listed above were not returned and the voicemail box is currently full.

it's been a somewhat lengthy and frustrating process so far...

Edit: just got it scheduled over the phone - it went much easier once they called me.
 
Last edited:
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i got back last night - the trip to palo alto / stanford went ok. the things i would note about the experience are:

1. parking can be an issue at stanford - there was some kind of event on the day of the exam. give yourself at least 45 minutes to sort it out. after looking for 30 mins, i ended up calling the coordinator and following directions to drive to the building where they have offices and parking there.

2. MRI causes some kind of PEM for me - one of the scans triggered moderately intense fasciculations in my back - so i think MRI can't be completely benign.

3. they draw a *lot* of blood - it was fine for me, but it's not a negligible amount.

i am hoping that my UW doc can get access to the scans and blood work - that should be possible as there is generally sharing of records between academic institutions - i will report back on this.

all in all, a reasonable experience.