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Outbreak/Clusters: : ME/CFS & Fibromyalgia Googlemap

Discussion in 'Action Alerts and Advocacy' started by cold_taste_of_tears, Dec 5, 2009.

  1. Hi everyone.

    Please consider adding your location to this map.
    (Not my idea).

    If you're worried about privacy, just chose a local town/city?

    If you have troubles with Internet Explorer adding your location, please try Firefox or Google Chrome Browser.

    Remember to add your location quite accurately, so don't type:

    New York.
    But...... Manhattan, New York, United States Of America. :p

    Link to website: Here
  2. flybro

    flybro Senior Member

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    pluto
    I've added myself

    It's quite sparse.

    Then again the word is hardly out, so it's not that bad.

    Next main purchase must be megaphone.
  3. Lily

    Lily *Believe*

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    Done!

    I'm counted!
  4. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    I'm on it now but keep in mind everyone - this shows us who is on the web and able to access sites like this one and speaks English as well as having CFS or FMS.
  5. kristin

    kristin Guest

    Thank you for the tip about IE. It did not record my location until I downloaded Google Chrome. And love your channel on youtube!
  6. Nina

    Nina Senior Member

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    What a great idea

    ... this is really something that has been missing. I'm spreading the word and have added my location.
  7. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    This is so great!:)
  8. alice1

    alice1 Senior Member

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    Toronto
    Happy to oblige.Done.
  9. Alesh

    Alesh Senior Member

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    Czech Republic, EU
    Will the coordinates of the points on the map be available? Then it will be possible to prove exactly by methods of spatial statistics in epidemiology if CFS has an infective component.
  10. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    now or when

    I'm wondering. Are we posting where we live right now or where we were when we got sick? I'm not sure what this map will actually show except where there are the most active online PWCs. Please correct me if I'm wrong.
  11. cfs since 1998

    cfs since 1998 *****

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    I hope people are adding where they got sick. That's what I did. I've moved to a different state since I got sick. The owner of the site ought to make this clear.
  12. George

    George Guest

    Counted

    Where does the 17 million number come from? Officially only between 1 and 4 million in the US, 250,000 in the UK, 195,000 in Europe, 50,000 in Australia, 30,000 in New Zealand, So where are all the other numbers?
  13. Nina

    Nina Senior Member

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    George, the 195,000 for Europe seem to be incorrect. In Germany alone we have about 300,000. This doesn't add up to your 17 million of course but is a lot higher than what you found.
  14. George

    George Guest

    Thanks Nina

    That's more than M.E. Patients in the UK. What critera are they using?
  15. Alesh

    Alesh Senior Member

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    "I'm not sure what this map will actually show except where there are the most active online PWCs. Please correct me if I'm wrong."

    It is at the bottom of all statistical investigations that the results are of a probabilistic nature. There are robust mathematical methods that can find out with some a priori given significance level if the points scattered in plain form clusters or not even if you cannot tell if it is so just by visual inspection. And I am quite confident there are statistical methods in spatial epidemiology that can "filter out" the bias from the sampling you mentioned.
  16. George

    George Guest

    Advocacy

    This map isn't about science, it's about advocacy. Being seen, being heard. You don't have to participate it's no biggy. It's just a way for some of us to feel counted and see others like ourselves that live in the same towns, the same cities. We are not alone.
  17. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Yes, I don't think the google map is going to add anything science-wise - but it is a lovely visual tool for feeling connected to a worldwide community.

    Perhaps this thread should be moved to Advocacy?
  18. George

    George Guest

    Sounds good

    Fresh eyes you want to check in with Cold TOT and one of the admins and see about getting it moved. It's a good thread and we want folks to remember it.
  19. Nina

    Nina Senior Member

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    George, it roughly correlates with the size of population, the UK have about 60 m inhabitants, Germany 80 m.

    With regards to criteria I guess it's the same as anywhere else: No consistent set of criteria is being used. Some use the Fukuda, others the CCC and a lot of doctors don't use ANY at all and base the diagnosis on what they have heard about the disease.

    In my opinion the 17 million are very likely including a lot of people with "Reeves disease".
  20. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Looks like they're going to move this thread over to Advocacy. Which seems right to me, so there won't be confusion about whether it's scientific - pretty sure it's not.:)

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