Outbreak/Clusters: : ME/CFS & Fibromyalgia Googlemap

[Cloud]

Great idea, but they will have to use color codes or something other than avatars for the count because as more pwc's sign on, the map will become covered in no time.

 

[fresh_eyes]

Great idea, but they will have to use color codes or something other than avatars for the count because as more pwc's sign on, the map will become covered in no time.

Good idea, Ross, especially on the zoomed-out view. If you zoom in, there's more room around each little person. It was kinda fun to click on "mine" and see a GoogleEarth photo of my post office!

 

[Cloud]

Good idea, Ross, especially on the zoomed-out view. If you zoom in, there's more room around each little person. It was kinda fun to click on "mine" and see a GoogleEarth photo of my post office!

Cool, didn't know about that....

 

[George]

Thanks Nina!

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".

'priciate the update to my numbers they must be outdated. Here's and interesting fact. If you start the infection of the population between 1915 and 1925 and extrapolate the number of sex partners per person times the number of children per generation and you go from that time to this time that would be roughly 17 million persons.

So did someone figure that out earlier? Is that why that number has been tossed around for the last couple of years? Who started using that number and why? These are the kind of questions that I'm researching. The 17 million number works perfectly with my outbreak theory.

PS if anyone wants to read my two blogs they explain what the heck I'm rambling on about. (grins)

 

[charityfundraiser]

It's interesting--in the US, it seems to be clustered in the East. Maybe that will change as more people sign up.

It's actually reflective of population density:

 

[usedtobeperkytina]

Also

Also, it will depend on whether there is a doctor in that area who recognizes CFS and will diagnose it or is misdiagnosing it as depression.

Tina

 

[starryeyes]

Very true Tina. Good to see you're still here.

Yay, Hopabout from PH just put herself on the world map. You have to click on the Large version to see her down in Costa Rica. She didn't get sick there but she lives there now and I wanted to see her there because I kept looking for her. I think it's fine since many people didn't know and put themselves where they live now and as others have pointed out, this is not a scientific map.

cf-- I like that population density map you posted. It's very interesting and yes, our CFS/FMS world map does reflect the general population which is what I figured it would do.

 

[garcia]

^ Yeah, it's interesting. I think the map's main skew is English-speaking countries plus some other European countries (since we are posting in English).

This plus the population density map make me think (as I did before) that the whole exercise is pretty pointless. The historic clusters/outbreaks we know of are pretty small compared to the number of people who have ME/CFS. It is a ubiquitous enough disease that you are not going to get meaningful geographic data from a survey such as this.

 

[starryeyes]

I think it's a feel good project. I like seeing that I'm not alone even though I wouldn't wish this illness on anybody.

 

[_Kim_]

Moved thread to Action Advocacy Forum

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.

I just read several posts on here suggesting that this be moved to the Action & Advocacy Forum. I agree and made the move.

 

[iofiel]

Added... if anyone lives in FL, feel free to PM me. I don't have anyone to talk to about it here.

 

[jace]

Bump - there are a lot of new members since this was last up top.

Here's the link againhttp://xmrv.me.uk/me-cfs-global-map.php

This is the same people as are helping the WPI with the UK study. All kudos and praise to them :Sign Good Job:

 

[Cloud]

Thanks Jace....I forgot about this map. It has really filled in. I've been curious for some time why we see minimal reports of ME/CFS from certain areas such as the Middle East, Asia, and South America. I know that language barriers are not the issue because I interact with 100's of people from those areas on line in non ME/CFS forums. Can't be censorship either. I remain curious.

 

[jimbob]

I'm in like Flynn!

 

[JT1024]

You're supposed to post where you got sick from what I just read.

 

[Mark]

Thanks Jace....I forgot about this map. It has really filled in. I've been curious for some time why we see minimal reports of ME/CFS from certain areas such as the Middle East, Asia, and South America. I know that language barriers are not the issue because I interact with 100's of people from those areas on line in non ME/CFS forums. Can't be censorship either. I remain curious.

Gosh! On a quick glance, that geographical pattern looks suspiciously like exactly what I'd have predicted, I'll have to look into this more closely later...

First task is to compare in detail with the Multiple Sclerosis distribution (which I first learned about via the Wikipedia page on MS). MS has a geographical spread based quite dramatically on location, specifically on latitude bands. Many studies have attempted to explain by looking at sunlight incidence, etc. but they haven't got very far with those theories. One thing that's been found is that what seems to be crucial is what latitude band the individual grew up in, ie where they were living during their teenage years. Which of course points clearly at an environmental factor. (There is obviously also a genetic component but of course only real idiots think that nature vs nurture is a good subject for an argument and should be pointed firmly in the direction of the nearest coin and told to play with it until they understand it...)

It seems there is much controversy over whether this distributions is due to genetic or environmental factors. There are known genetic factors in MS so the research world has divided into a war between those with genetic vs environmental emphasis.

It seemed to me when I read about all this that the most obvious explanation for the observed geographical spread for MS was not "incidence of sunlight" (the geographical factor that's received most attention) but rather some kind of organism that grows in certain conditions, and of course by that I mean molds and fungus, and specifically, certain classes of toxic mold.

The geographical distribution on the ME/CFS outbreaks/clusters googlemap looks awfully familiar...

Here's the prevalence map for MS:
http://www.atlasofms.org/query.aspx?pq=yes&s=1&q=3&r=Global&year=2007

I'd be most interested if others can observe any differences between these two distribution maps, or whether they are basically the same distribution. If they are basically the same, in sufficient detail to be a striking observation, that would be huge news for us I think.

 

[fds66]

Mark, I don't know how much of the distribution on the ME map is due to where people have computers, join in the internet and speak english?

 

[Marco]

How many times have you heard "you don't see Chronic Fatigue Syndrome in Africa" or similar sentiments.

There is a post, possibly in the advocacy section, with papers from the last meeting of the UK Medical Research Council (MRC). Included in these papers is a literature review of papers published worldwide on ME/CFS.

One of these papers studied the prevalence of 'chronic fatigue' in Nigeria and found it much higher (twice as high if I recall correctly) than in the USA. The authors discuss the possibility of insect vectors carrying fatiguing diseases as a contributory factor.

Regardless. You certainly do see CFS in Africa and no doubt anywhere else in the world where it is recorded.

BTW - I also see this as more of a 'feel good' project. I became ill in the UK but may be able to trace it back to a holiday in Greece. On the other hand if childhood vaccines play any part then I'd have to trace it back to the UK?

 

[Marco]

Oh and geographical location (e.g. by latitude) doesn't necessarily equate to environmental factors but may reflect genetics and paleolithic population movements.

For example the high prevalence of cystic fibrosis causing gene mutations in Scotland.

 

[Mark]

Mark, I don't know how much of the distribution on the ME map is due to where people have computers, join in the internet and speak english?

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:

I've been curious for some time why we see minimal reports of ME/CFS from certain areas such as the Middle East, Asia, and South America. I know that language barriers are not the issue because I interact with 100's of people from those areas on line in non ME/CFS forums.

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.