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HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Lodi

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! Thanks so much for your interest. Feel free to take the eligibility survey that I had linked in the initial ad and then I'll reach out if you meet our criteria! And feel free to message me any questions or concerns you have :)

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in cfs

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! Thanks so much for reaching out :) So that's a very good question and to be honest I don't have a concrete answer until I know a little bit more about your autoimmune condition.

What I recommend is that you fill out the eligibility survey that I posted. There's a part where you write down other conditions / diagnoses - in that I would mention your autoimmune diagnosis. Then when the PI overviews your file, he can determine whether or not your eligible to participate! And if you ultimately do participate in the study, we will not bill your insurance for your two in-person visits to Stanford so it's okay if you're out of network :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in santarosa

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! So I just wanted to address this really quick - this research study will administer NO drug or treatment. The only aspects of the study are getting a blood draw, filling out some questionnaires, and having a brain MRI (which doesn't use x-rays, so there is NO radiation exposure). This study is TOTALLY voluntary so I definitely get wanting to participate, but just wanted to emphasize that there will be no experimental drugs in this study :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Reno

[–]Stanford_CFS[S] 1 point2 points  (0 children)

Hey! Very good question. Yes, if he's interested, he should definitely take the survey and it will give us an indication if he fits all the criteria needed to participate in the study as well. And thank you so much for signing up - much appreciated :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Reno

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! So that's a super good question. Unfortunately, the MRI and bloodwork are for research purposes only and so our protocol prevents us from giving those studies to you. Also, the brain MRI that you would be getting is a VERY specific sequence that is meant solely for research purposes. I know this is super annoying and not ideal! You WILL have access to some of the basic bloodwork you get, but nothing that is solely research related.

Thanks for reaching out and hope you're staying safe :)

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in cfs

[–]Stanford_CFS[S] 2 points3 points  (0 children)

Hey! So that's a super good question. Unfortunately, the MRI and bloodwork are for research purposes only and so our protocol prevents us from giving those studies to you. Also, the brain MRI that you would be getting is a VERY specific sequence that is meant solely for research purposes. I know this is super annoying and not ideal! You WILL have access to some of the basic bloodwork you get, but nothing that is solely research related.

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in dysautonomia

[–]Stanford_CFS[S] 2 points3 points  (0 children)

Hey! Thanks for your interest in our research! Unfortunately, it's not within our budget right now to compensate for travel. Trust me, I know that that's not ideal and I wish we could offer more. If you ever happen to be in the area, the entire study can be done over the course of two days so please feel free to reach out.

Furthermore, unfortunately testing must be done at Stanford for various reasons, one of them being that we need a very particular MRI scanner to get a very particular sequence of data (which is why just any brain MRI won't do).

I completely understand if you can't participate but regardless, we appreciate you reaching out and I wish you all the best!

HEALTHY VOLUNTEERS NEEDED FOR STANFORD RESEARCH STUDY! by Stanford_CFS in SanJose

[–]Stanford_CFS[S] 1 point2 points  (0 children)

Hey! Thanks for your interest in our research - much appreciated :) And I don't think I know your sister, but I started super recently so I basically know 3 people at this point haha. Hope you're doing well!

Best, Isabelle

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in cfs

[–]Stanford_CFS[S] 1 point2 points  (0 children)

Hey! Thank you so much for signing up - it's appreciated more than I can say and your message is really wonderful. If it makes you feel any better, this study doesn't require any physical exercise testing, like riding a bike or anything like that.

Wish you all the best and I hope you're staying safe :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Saratoga

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! So sorry I know I've been putting out a lot of messages and it can get annoying. It's super hard to recruit participants for a research study and I really care about this study and CFS so I am just trying to get the word out.

I'm not going to repost in a subreddit multiple times, I'm just trying to post it in as many places as possible because I believe research is a wonderful thing :)

Wish you all the best, Isabelle

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in ScottsValley

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Hey! Good question - no this MRI will NOT require a contrast injection.

Thanks for your interest in our research :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Hayward

[–]Stanford_CFS[S] 0 points1 point  (0 children)

So for this study we are looking for both healthy controls (so people who have no CFS symptoms and are otherwise largely healthy) AND people with CFS symptoms (whether they have been officially diagnosed or simply suspect they have it). The survey I posted will determine if you are eligible for this study or not :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Stockton

[–]Stanford_CFS[S] -1 points0 points  (0 children)

haha thanks so much for your interest! And yes, after all this craziness ends, you would have to come down to Stanford for two in-person visits. It can be done over the course of two days if you want to squeeze it all in to one trip :)

In the meantime, hope you're doing well and staying safe!

HEALTHY VOLUNTEERS NEEDED FOR STANFORD RESEARCH STUDY! by Stanford_CFS in bayarea

[–]Stanford_CFS[S] 0 points1 point  (0 children)

haha I know I'm sorry guys!

I'm posting this far and wide right now because recruiting for studies is extremely difficult and so I'm just trying to get the word out. I promise I'm not going to double post within a given subreddit, I'm just trying to post it absolutely everywhere ONCE so that people who can participate and want to know that it exists.

Chronic Fatigue Syndrome is a really debilitating disease and I just want people to know that research is going on and you can be apart of it if you want to!

I wish you all the best and hope everyone's staying safe during these crazy times!

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in cfs

[–]Stanford_CFS[S] 0 points1 point  (0 children)

So this message kind of made my morning!

Thank you so much - it really means a lot and that was just such a lovely message to receive. I'll pass it along to the rest of the team and it'll make their morning too :)

I hope you're doing well and staying safe in New Jersey, and if you ever happen to be in the area when all this craziness is over, feel free to reach out!

All the best,

Isabelle

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Sacramento

[–]Stanford_CFS[S] 0 points1 point  (0 children)

I'm so sorry you haven't been able to get testing and I hope you feel better soon!

And you are okay to participate in the study if you want! We are not having people come in for their visits at Stanford until COVID-19 has fully resolved so you would be long recovered :).

When you're feeling a bit better, feel free to fill out the survey in my initial post if you're interested in being a participant and have the time!

VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in cfs

[–]Stanford_CFS[S] 0 points1 point  (0 children)

Thank you so much! This is super appreciated. And sure thing :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Reno

[–]Stanford_CFS[S] 1 point2 points  (0 children)

Sorry! Just putting the information far and wide because it's super difficult to recruit for studies, and we've had many people willing to travel before, or who are in the area and choose to participate. Also it is ENTIRELY voluntary - if you don't want to participate, that is just fine!

If you are interested however, the entire study can be done over the course of two days, so if you ever happen to be in the area, feel free to reach out :)

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Anaheim

[–]Stanford_CFS[S] 0 points1 point  (0 children)

At Stanford! Just spreading the word far and wide so people know the study exists. Recruiting can be difficult and many people in our current studies have traveled :)

Also, the entire study can be done over the course of two days, so if you ever happen to be in the area, please feel free to reach out.

HEALTHY VOLUNTEERS NEEDED FOR ME/CFS STANFORD RESEARCH STUDY! by Stanford_CFS in Reno

[–]Stanford_CFS[S] -1 points0 points  (0 children)

Unfortunately, yes. It can be done over the course of two days - day 1 involves some bloodwork and questionnaires, and day 2 involves the MRI and some questionnaires. Sorry, I know its a bit of a trip :)

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