New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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SolveCFS Biobank, Who is supporting this on this forum?

Discussion in 'Active Clinical Studies' started by *GG*, Jun 12, 2010.

?

Are you going to participate?

  1. Yes

    85.0%
  2. No

    15.0%
  1. *GG*

    *GG* Senior Member

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    Concord, NH
    I sent in my paperwork yesterday, anyone know how long it takes to get the paperwork etc?

    I have 2 Dr appt early next week!
     
  2. jspotila

    jspotila Senior Member

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    Once the office receives your consent form, they'll send you the clinical questionnaire. We have two staffers working on the BioBank now, so hopefully it will be a quick turnaround for you.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
  4. jspotila

    jspotila Senior Member

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    The questionnaire is designed to help people assess whether or not they have CFS. If a person has already been diagnosed, then just email the BioBank to get started!

    biobank AT solvecfs DOT org
     
  5. CateK

    CateK

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    upstate New York
    I would like to, but I just don't have the energy to wade through the web pages and decipher the exclusion conditions and how they apply to me. I do wish the web pages were set up for brain-fogged folks :ashamed:
     
  6. jspotila

    jspotila Senior Member

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    CateK, I am sorry that you are having trouble with the web pages. Rather than struggle with the brain fog, you might want to consider emailing the BioBank at biobank@cfids.org. They can answer any questions that you have.
     
  7. CateK

    CateK

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    upstate New York
    Thanks for responding! I'll do that.
     
  8. *GG*

    *GG* Senior Member

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    Now I see your point, my bad. If someone else wants to do this they can, I don't think I will. FYI
     
  9. jimbob

    jimbob ME/CFS84-XMRV+

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    I'm in the biobank, but they're not using me!
     
  10. jspotila

    jspotila Senior Member

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    Are you referring to the BioBank collecting your clinical information but not blood samples? If so, I can explain a little bit. Processing and storing one person's blood samples costs $400 or more, depending on what kind of processing is being done. The Association wants to expand the BioBank as quickly as possible, but paying the $400 tab per person would significantly limit the expansion. Instead, the BioBank is collecting the clinical information for inclusion in the database. When a researcher needs a cohort, the database can be searched (for example, women over 40 with illness for more than 10 years - purely hypothetical) and the precise cohort assembled. At that point, blood samples (or cheek swabs) would be collected for that study.
     

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