1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Hospital Wants Input From Chronic Fatigue Syndrome and Fibromyalgia Patients on Possible NEID Center

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 19, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
  2. Snow Leopard

    Snow Leopard Senior Member

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    Note that the survey appears only to be relevant to those in North America.
  3. Sasha

    Sasha Fine, thank you

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    Yup, and fair enough because they presumably want to get some idea of market there. But it would be good news for all of us down the road - if a specialist centre is set up, we can all benefit from what they learn.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    If a center like this is financially successful, it will be easier to sell the concept to other hospitals.

    Tina
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This survey only takes about 5 minutes--seems like a good way to use 5 minutes!

    Sushi
  6. SOC

    SOC Moderator and Senior Member

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    Very easy, simple survey. No tricky or personal questions. Didn't take more than a couple of minutes.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, very short.

    Now why would we want to trick you? LOL

    Tina
  8. Ember

    Ember Senior Member

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    Correction. Tina noted that the Clinic in B.C. is "focused on Complex Chronic Diseases (ME/CFS, FM, Lyme Disease).” But if you follow your link, you'll notice that our Clinic instead uses nomenclature consistent with the ICC:
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank you, Ember.

    Tina
  10. madietodd

    madietodd Senior Member

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    They ask if you live in Alabama, or one of the contiguous states, so that's likely where they want to open.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes. Madie, that is true.
  12. SpecialK82

    SpecialK82 Senior Member

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    Very cool, just filled it out. Thanks so much Tina!!
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Been there, done that yesterday. It was simple. It was quick.

    One of the questions is if you have to fly to get to a health care provider. They may be wondering how many people beyond the contiguous states might travel that far. I think the more feedback they get, the better.
  14. Nielk

    Nielk

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    Did it yesterday too. Bumping it for others to see.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thanks, we have 524 who have responded. Spread it around, especially to those in the Southeast. I have found that the word "survey" is not popular. Maybe it is better if we say, "Please answer these five simple questions."

    People think of surveys as being long with complicated, poorly-written questions.

    Remember, the question on how you pay is how you pay for most of those services. Avoid "other" if you can.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Here's the link, if you need it.

    http://survey.constantcontact.com/survey/a07e6a230arh6193mcp/start

    When you share with others, be sure that you url address you share ends with "start."
  17. Cort

    Cort Phoenix Rising Founder

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    Just five questions....very easy to do. Whoever stated a successful center in one state could very well mean successful Centers elsewhere - so wherever you are in the US - please fill out the survey!
  18. GracieJ

    GracieJ Senior Member

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    This is a breakthrough in its own right. Good news!

    Let's hope any new clinic like this allows phone consultations if lab work is in place.

    If it opens, they will be busy! That would mean branch centers opening up...
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Tina,

    Curious about why to avoid "other" in the payment for services section. It was the only one that fit for me as my means of payment is kind of equally divided between two of the choices. I chose "other" and then wrote in an explanation. Will that work OK for the purpose of the question?

    Sushi
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    We'll make it work. The question asks which method for most or all. So, if it is equally divided, then I guess "other" is for you.

    The "other" will not be in the percentages of each answer. I will have to put an explanation of the "other" answers in my report. The answers that are already provided generate a scale chart of percentages. With 1,000 respondents, I have to go through and figure out all the "other" answers and give an explanation, but they won't show in the scale chart this survey will generate.

    Tina

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