Outbreak/Clusters: : ME/CFS & Fibromyalgia Googlemap

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alex3619

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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


That will obviously be a factor, and the weaknesses of the map have been pointed out before; one of the biggest problems in analysing geographical data is not knowing whether to collect (a) where you grew up or (b) where you first became ill. However, as Cloud pointed out earlier in this thread:



There are several other reasons for being interested in the connection with MS. One of the most intriguing is that MS has also become apparently epidemic in recent years. I wrote about this some months ago, and really must get round to collating some of my posts on this subject. From memory, the gist of it is this: there has been a sharp rise in atypical forms of MS and when you interpret the time-lags appropriately, the start of this rise dates back to about 1987. The "new" form of atypical MS disproprtionately affects women rather than men - 80% are female - whereas "traditional" MS is about 50-50 but affects slightly more men. The geographical spread of MS is far better researched than that of ME/CFS of course, and there is no real dispute about that data: MS definitely affects people who grew up in the specific parts of the world that we are talking about here. At some point I would like to dig into more detail in comparing these two cluster maps because if the detailed picture also matches well, that would be quite compelling evidence.

Final note that the "mold theory" and the "XMRV theory" are NOT incompatible, especially remembering that the WPI and John Coffin have always said that there almost certainly need to be co-factors to XMRV infection. My own 'big picture' theory, which I haven't brought together yet in writing, incorporates both XMRV and toxic mold, as well as IBS, MS, IBS, FM, GWI (all of which are basically ideopathic neurological/immune disorders), and much more besides. It's just a theory of course, but it does synthesise all the available information I've found, on this site and elsewhere.
 

Mark

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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...
 

Dolphin

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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?
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.
 

Dolphin

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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!).
 
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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?
 

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.
 

Little Bluestem

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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.
 

Valentijn

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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.
 

taniaaust1

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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?
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.