1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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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. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    XMRV and MS

    Hi Mark, you are probably aware of this from the way you write your post, but I thought I would comment on this for those who are not yet aware. The number of atypical MS patients tested for XMRV is extremely small (3 so far as I am aware) but every one has XMRV. Bye, Alex


     
  2. Marco

    Marco Old blackguard

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    Near Cognac, France
  3. Mark

    Mark Acting CEO

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    Thanks Alex, I hadn't seen those results but expected them, they seem to begin to confirm what I've been saying, that XMRV will be involved in multiple conditions. If there were more such positives, interest and money could come from other, more well-known and well-funded conditions...
     
  4. Dolphin

    Dolphin Senior Member

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    The US did two big random number studies which found prevalences of 235 per 100,000 adults (Reeves, 2003) and 422 per 100,000 adults. If you took an average of them, and a world population of 6 billion you'd be close. Or 4 billion adults aged 18-59 in the world and use the 422 figure. I'm just making random (educated) guesses.
     
  5. Dolphin

    Dolphin Senior Member

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    What about having one of these just for members of PR?

    Not important and I'm not volunteering but if one of these is easy to set up I'd be curious to see the distribution of the members of PR.

    Of course, if there was a simple way that could count up the number of countries on the forum, that'd be interesting (in an unimportant way!).
     
  6. Malachy

    Malachy

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    I looked at the map for Australia. It seems to correlate more with population density, socioeconomic status and reliable internet access than it does with the real prevalence of ME/CFS/ETC. I can see how putting yourself on map in the middle of a number of other people could make you feel included, but how about someone who lives in a low-SE-status or remote area where self reporting rates are inherently low.

    In a country where your nearest medical practitioner can be 600km away are you just reinforcing a sense of isolation rather than giving sufferers a way to feel included in a global advocacy group?
     
  7. snowathlete

    snowathlete

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    I'm in the UK and just added myself. Interestingly there is someone in the same estate as me with it, and someone in the town where i grew up in a street where i delivered papers as a boy of 13.

    Flaws aside, I quite like this map.
     
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    I like the map, but did not add myself. I became ill on the last day of an 8-day vacation, so was probably not exposed to whatever made me sick at the place where I was living.
     
  9. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    I've tried adding myself before, with no luck ... maybe I had the format wrong. Trying again! There's two cases showing up around the huge park I live near. I also have a neighbor who came down with FM last year, and one diagnosed with "burn out" (considered the same as ME/CFS by some psychologists) a couple years ago, who had mobility and getting-off-the-floor issues.
     
  10. taniaaust1

    taniaaust1

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    Sth Australia
    The more country a person is in Australia.. I think the less likely that person is to be diagnosed. I say this as I grew up in a country town and ended up having to find doctors in the city to get a diagnoses (all the country doctors would do, is keep telling me I had the flu). As far as I know still none of the doctors (there is about 9-11 doctors there) will diagnose ME/CFS (I know someone there who went 25 years without a diagnoses and another who had ME/CFS who died without a ME/CFS diagnoses..the best he could get from our town doctors was FM diagnosis).

    On the map thou my country town is 45 mins freeway drive from Adelaide.. without a close up look, my little symbol, appears to be in the city. There is two of us from my country town marked on the map (I know 3 of us who lived in that town).

    Ive moved now but wont put a new thing down for where I live now.
     
  11. PhoenixDown

    PhoenixDown Senior Member

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    UK


    Here, it's about MS and discusses geographic location at somepoint.
     
    merylg likes this.

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