Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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World Map of ME/Chronic Fatigue Syndrome

Discussion in 'General ME/CFS Discussion' started by cronhly, Apr 16, 2016.

  1. cronhly

    cronhly

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    AndyPandy, Dolphin and John Mac like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Just FYI-- worldmaps will want information from you.
     
  3. cronhly

    cronhly

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    You can join the map anonymously without having to provide any personal data
     
  4. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I couldn't join anonymously. They required my street address (not just city & state) and e-mail.
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Ditto
     
  6. John Mac

    John Mac Senior Member

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    Liverpool UK
    I was able to put my address as the centre of my city just my putting the city name in, I actually live 10 miles from the centre.
    I don't think it has to be an accurate address.
     
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This is the second such map. Some years ago there was a map for CFS, and one for FM, but I am not sure there was ever one for ME.
     
  8. Mesurfer

    Mesurfer

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    PA/NJ
    You don't have to enter your exact location, just do your zip, and then you can move the pointer anywhere on the map you wish.
     
    Little Bluestem likes this.
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I think the mistake I made was not clicking on 'Find' before hitting 'Next'.

    I put myself in a park. I considered the cemetery, but decided against.

    Oops, we got stuck on e-mail and month of birth again. I don't know who is behind the map and I am not giving them that information.
     
  10. JohnCB

    JohnCB Immoderate

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    England
    Have you considered throw away email addresses? I'm looking at this at present. Wikipedia do an article on it https://en.wikipedia.org/wiki/Disposable_email_address and there is tons of stuff if you Google on throw away email or similar terms. There are websites that offer various different approaches to this so you need to think what you are trying to achieve. Different people want different things, perhaps time limited or limited to the number of responses. Of course you have to think what the throw away email providers are getting out of this too. Who do you trust in the end.

    My main approach to this for some years is to have and internet domain of my own, such as example.com and then I can make up individual addresses for different purposes and use say phoenixrising@example.com to register here. That way if you register a unique email with a dodgy site and you start getting unwanted email, you can route it into your spam folder.

    In the UK it is pretty cheap to register domains and you can even get a .me.uk domain (where me is the pronoun, meaning the domain is intended for personal use) such example.me.uk. I have registered a couple of domains through a domain hosting comapny called 1&1 at https://www.1and1.co.uk/. There are cheap and they have been reliable for me for about 15 years. You can just register a domain with them and use their free service to forward email and website to your ISP and collect you email that way. They offer a webmail service too.

    I think they operate in the USA too. They are a German company.
     
    Little Bluestem likes this.

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