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CFS Exercise and Brain Scan Study - Upcoming CFS study with Dr. Baraniuk at Georgetown University

Discussion in 'Active Clinical Studies' started by August59, Feb 3, 2015.

  1. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    If anyone is interested in participating in a CFS study with Dr. Baraniuk???
    The attachments that are mentioned in the email are attached.


    We would appreciate you forwarding our study to your contacts. Feel free to share the Informed Consent and General Itinerary as well. We will be actively recruiting as of May 2015 and will be looking for about 30 more participants both control and CFS.

    -----------------------------------------------------------------------------

    Thank you for getting back to us regarding your participation. The lab is currently on hiatus and will resume the study this May 2015. We can put you on our contact list for summer participants to recruit at a time closer to your enrollment date. Would you be available to participate this summer?

    This study is a three day program that includes exercise on a stationary bike and fMRI scans. I've attached the Informed Consent and the General Itinerary as a refresher for what participation entails. You do not need to take any action with these forms other than to read them closely to familiarize yourself with the study.

    Thanks so much,
    Emma Ordway

    Research Assistant
    Chronic Pain and Fatigue Research Center
    Pre-Clinical Science Bldg Rm: LD3
    Georgetown University Medical Center
    Phone: 202-687-8231
    Fax: 202-687-9886
    Chronic Pain and Fatigue Research Center Website
    Chronic Pain and Fatigue Research Center Website #2

    CONFIDENTIAL: The information contained in this communication, including its attachments may contain confidential information and is intended only for the individual (s) or entity (ies) to whom it is addressed . The information contained in this communication may also be protected by legal privilege, federal law or other applicable law. If you are not the intended recipient of this communication, you are hereby notified that any distribution, dissemination or duplication of this communication is strictly prohibited. If you have received this communication in error please immediately delete and destroy all copies of this message and please immediately notify us of the error by separate communication . Thank you.
     

    Attached Files:

    Last edited: Feb 6, 2015
    Anne, Kati, MeSci and 2 others like this.
  2. Alea Ishikawa

    Alea Ishikawa

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    You will need to download the zip file to your computer.

    Afterwards, click "Edit" at the bottom of your post on Phoenix Rising.

    Click on "More Options" in the lower right corner.

    Click on the "Upload a File" button at the bottom near "Post Reply" beneath the message.

    Click on the zip file and click "Open."

    Click "Save Changes."
     
    rosie26 and August59 like this.
  3. August59

    August59 Daughters High School Graduation

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    Thanks!
     
  4. Tom Kindlon

    Tom Kindlon Senior Member

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    Here are the two uncompressed files.
     

    Attached Files:

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  5. twowishes

    twowishes

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    If anyone is considering volunteering for this and would like to know more, I participated last fall and would be happy to answer any questions.
     
    rosie26 likes this.
  6. August59

    August59 Daughters High School Graduation

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    I was suppose to be there last fall, but I had a family health emergency and was not able to make it. I do hope to make it when they resume the study.

    Was it pretty tough? Did you get the least bit of indication of the fMRI / Exercise test results? I thought I had read last year that they may take samples of CSF, did they take a sample of your CSF?

    It's going to be a long drive for me from South Carolina, but I'm going to do my best. It is my hope that this study will at least partially replicate results from other exercise test plus take it even further into defining what is going on from a neuro/pulmonary/endocrine perspective.
     
    rosie26 likes this.
  7. twowishes

    twowishes

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    @August59: Yes, overall I found the study pretty tough, though they did what they could to make things easier! Dr Baraniuk runs the exercise test at a slightly lower-than-usual activity level (% of your max exertion) because he wants to stress people as little as possible. And there's a lot of downtime where you can just rest. Overall, I found the exertion about equal to my normal life -- MUCH more exercise and also stress in terms of the setting and blood draws and things like that, but also more time to rest in bed, no parenting or house cleaning or errands, and meals on a tray 3x a day. (And of course it would be much more tiring with a long drive tacked on. The things we'll sacrifice for even the hope of a research breakthrough....) No CSF -- that's a different study -- but they did take a LOT of blood!

    Dr B did share the results of the exercise test and most? all? of the extensive blood tests. I haven't heard anything about fMRI results. He also sat down for quite a long time to talk through diagnoses and whatnot and is fairly open to answering questions and giving advice. And for what it's worth, the study pays $200. Pretty sure there's a travel reimbursement element too when applicable, but I'm a local so not sure how that works.

    Last I heard in October, they still need a handful of study subjects. It feels good to be a part of the small amount of research that's happening out there -- can't wait to read all the results someday.
     
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  8. August59

    August59 Daughters High School Graduation

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    FYI - This study is now taking applications and will soon begin scheduling for June 1st and afterwards.

    Edit: They are also offering an option for for a "spinal tap". I'm not sure if this looking for cytokines or specific proteins. My guess is it is proteins since Dr. Baraniuk's previous study found CFS specific proteins.

    http://phoenixrising.me/archives/11840

    This may also help replicate the study by Dr. Schutzer.

    http://forums.phoenixrising.me/inde...id-analysis-distinguishes-lyme-from-cfs.8871/
     
    Last edited: Apr 13, 2015
    oceiv and rosie26 like this.
  9. RCFSNP

    RCFSNP Nansy, CRNP

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    Yes, Dr. Baraniuk's study is up & running. I participated the week of June 8th. Wonderful staff and careful arrangements for CFS patients at their research clinical center. If it would be easier, why don't you fly to BWI or IAD or Reagan and I will pick you up and drive you to the clinical center?
     
  10. Bob

    Bob

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    I'm just posting a summary of the above study, taken from Dr. Baraniuk's department's website. This info was posted on the website on July 2nd 2015:
    These details are taken from here:
    https://sites.google.com/a/georgetown.edu/baraniuklab/announcements/cfsexerciseandbrainscanstudy

    Recruitment details for all ongoing trials can be found here:
    https://sites.google.com/a/georgetown.edu/baraniuklab/announcements
     
    Last edited: Jul 29, 2015
  11. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Surprised to see they are excluding people with NMH and POTS.
    Don't most ME patients have one or the other?
     
    Valentijn likes this.
  12. user9876

    user9876 Senior Member

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    The more co-morbid conditions you can exclude the easier it is to interpret the results
     
  13. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Absolutely. Just seems like you might skew results a different way if the stat that 90% of us have orthostatic intolerance is true. Ie - are you studying ME/CFS or some small subgroup?
     
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