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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Stanford: Are you a local patient?

Discussion in 'Active Clinical Studies' started by JaimeS, May 16, 2017.

  1. JaimeS

    JaimeS Senior Member

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    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
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    That is great Jaime!
    I assume you are not using an age cap then? Older patients are often left out of studies because of boiler plate age caps. This is a shame in ME/CFS research because these are usually the patients who have been sick for the longest and there is likely something interesting to learn from them.
     
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  3. JaimeS

    JaimeS Senior Member

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    We are not using an age cap. I know when we were looking for healthy controls we had individuals well into their 70s.
     
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  4. Groggy Doggy

    Groggy Doggy Senior Member

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    Do you feel comfortable posting your work email or a specific email related to the study?
     
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  5. BellaSC

    BellaSC

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    Hi Jaime- so if I'm interested how do I get signed up?
    I'm local to the Bay area and a patient of Stanford and Dr. Montoya's CFS Clinic.
    Thanks
     
  6. JaimeS

    JaimeS Senior Member

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    If people PM me I can let them know how to contact me via email. :)

    Just to reiterate, too: keep in mind we can't advise you based off of what we find, though we can send stuff to docs.

    Researchers here are so invested in patients that in the past, they've spent hours talking people through their data... but then the research itself can be hobbled. Interpreting people's results in this way would be a full-time job in and of itself. :) That's why we want your clinician to do it. :D

    (Also someone let me know it's in our IRB... therefore we absolutely have to do things this way.)

    @BellaSC please PM me so I have a record -- thanks so much for volunteering! It's awesome we have three volunteers so quickly. :D

    -J
     
  7. Alvin2

    Alvin2 If humans were rational...

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    I'm located in Canada, is there a way i can still participate?
     
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  8. JaimeS

    JaimeS Senior Member

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    Of course! However, the cost of travel may be prohibitive for some folks. :(

    For some of our samples, it may not matter how they were collected if they are shipped frozen and fast. In other cases, we need the patient to be on-site. We might be able to collect samples long-distance for some of our future studies. :) Just looking for local patients right now.

    ......if that changes, I expect everyone from PR will donate! (And their brothers, sisters, and mamas).... ;)

    [edited for clarity]
     
    Last edited: May 16, 2017
  9. JaimeS

    JaimeS Senior Member

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    Five so far! Thanks everyone!

    [Edit: seven so far! Awesome, guys!]

    [Edit 2: nine so far! Thank you to everyone who has volunteered so far!]
     
    Last edited: May 18, 2017
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  10. Jesse2233

    Jesse2233 Senior Member

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    How often does one need to come it?
     
  11. IreneF

    IreneF Senior Member

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    So am I.
     
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  12. JaimeS

    JaimeS Senior Member

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    It will depend.

    So there are two reasons we might ask people to come in repeatedly.

    1) To measure the same values over time, to see how they shift

    2) Because we have a lot of testing planned, yet for many tests the blood must be fresh.

    Right now we're looking at a case of the latter, rather than the former. We can't take blood for everything we need in one sitting, because for many of the tests it has to be processed fresh, and there will be an issue with equipment, expertise, manpower in getting all that done simultaneously that presents a challenge.

    So you may donate three vials one day, and then in a month we might ask if it's possible for you to come back to donate three more because a new hypothesis has been generated, or because we'd like to repeat those results...

    All very hypothetical right now, since this is just preliminary, to see who's interested and available. :)
     
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  13. JaimeS

    JaimeS Senior Member

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    @IreneF I will send you a PM so I have a record of that. :)
     
  14. Kati

    Kati Patient in training

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    Hi @JaimeS, for the purpose of clarity, you are discussing recruiting local patients and then you are discussing recruitng out of town patients. It would be best to clarify what you are recruting for exactly, and make it clear in your thread title. Patients are desperate and also desperate to help and the out of towners need to know if you are recruiting them right now or should wait for that particular invitation.

    Best, Kati
     
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  15. JaimeS

    JaimeS Senior Member

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    @Kati -- thread title asks: Stanford -- are you a local patient? So I hope that patients local to Stanford will click.

    In the reply where people ask if we can ever get non-locals to donate, I made some changes for clarity. :)
     
    Kati likes this.
  16. Diwi9

    Diwi9 Senior Member

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    I'm not buying this @JaimeS ...you guys are housing a vampire :wide-eyed:
     
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  17. Kati

    Kati Patient in training

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    Thanks. It is much clearer now :thumbsup:
     
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  18. JaimeS

    JaimeS Senior Member

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    WE MAKE THIS JOKE ALL THE TIME.

    "The bloooddd... it must be freeesssh.... for, er... SCIENCE REASONS..."
     
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  19. Alvin2

    Alvin2 If humans were rational...

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    I understand, one of the articles on Omf.ngo mentioned Canadian patients so i am curious if they are working with someone who is located near me.
     
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  20. humanrising

    humanrising

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    I am interested , don't live super close, an hour in half so doable some of the time. Do you have a start date? looking for low income housing so not sure where i will be but if i stay in the area would love to participate. thank you for inviting us!
     
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