Outbreak/Clusters: : ME/CFS & Fibromyalgia Googlemap

[cold_taste_of_tears]

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.

Link to website: Here

 

[flybro]

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.

 

[Lily]

Done!

I'm counted!

 

[starryeyes]

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.

 

[kristin]

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

 

[Nina]

What a great idea

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

 

[fresh_eyes]

This is so great!

 

[alice1]

Happy to oblige.Done.

 

[Alesh]

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.

 

[gracenote]

now or when

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.

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.

 

[cfs since 1998]

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.

 

[George]

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?

 

[Nina]

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.

 

[George]

Thanks Nina

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.

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

 

[Alesh]

"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.

 

[George]

Advocacy

"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.

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.

 

[fresh_eyes]

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?

 

[George]

Sounds good

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?

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.

 

[Nina]

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

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".

 

[fresh_eyes]

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.