Hi Angelamic..Thank you so much for this map! I now have a lot of questions. What is going on in the USA that would account for the large myositis population? Chemical weapon slow leak? Maybe the foods we eat? Something in the water? Etc.. Check out the UK too!

I notice this map includes the names of many people when you touch on each balloon, so we are being tracked. Why do we need to be tracked? Hmmm?

I am going to print this out and discuss with my doctor. Thank you for your post! This is an eye opener.

Angelamic...Do go to The Myositis Association and share this map in the community forum. The site is www.myositis.org
Thanks!

@trpt1
My guess is that individuals must voluntarily add their own marker, because there is an option to do so in the menu bar. If that's the case, more sparsely populated areas wouldn't have as high a concentration of markers, and more remote areas without internet access wouldn't enable one to place a marker. To track us on a public forum without our permission might be a violation of Hipaa law, so I think this is voluntary.

I Found it on a support Facebook page. people can add their name and type on the map there. i did volunteer. i dont believe doctors can add people. i kinda hope not.

Hi Angel. There are Myositis support groups here in the uk who organise their own maps to help support groups know where the concentration of oeople with Myositis are. I don't use any form of social networking like Twitter or Facebook as I simply do not trust my information stays where I put it. I know my doctors would be struck off the medication register here and probably go to prison for sharing my information with anyone. There is some serious talk of them being allowed to give information but not names in the interest of research. We can sign to opt in or out of this. I have signed to opt out. I agree with Nanny about the way the stats are kept and the information the maps are giving. I don't really believe 'big brother' is the slightest but interested in us as people with Myositis, if only !!! Autumm

Interesting!!

Why such a big concentration of myositis in USA and UK? Notice that the Soviet Union never has sick people. No one in South America? What is really going on to cause this level of Myositis participation?

right? makes you think huh?

Hi Trpt. I believe it reflects the standard of good care and support groups in both countries. This is what we do. We already know from this site and others that the medical care and peer support is just not out there in most other countries which is why we very often get posters from far away. I don't believe its anything sinister. Best wishes to you. Autumm

Autumn, You are always kind and caring. If it is true that no myositis is happening in the Soviet Union, South America, most of Asia and India, then we need to start asking why it is happening in abundance here and in the UK. This is a fair question. I do not think this is a matter of suspicion. We need to ask what is going on here that would cause these numbers.

Hi Trpt. Of course Myositis is happening in these countries. It's just not being recorded and if its bring treated, this will be for the few not the many. This is not right, medicine for the sick is a basic human right and should be free and unquestioned at the point of delivery as with Education housing and so many other things. It's always made me really mad when people have to still fight for these things when the developed world spends oodles of money on stupid things which benefit no one. Oops!!! Autumm get off your soapbox !!!!! I promise this is my last rant. I only rant very occasionally. Autumm

Autumn, You have a big heart and care for people. In the USA, things are changing with the new insurance. Medicine and procedures that used to be accessible to everyone are now out of reach due to high costs.

A couple months ago, I was offered Prolia injections. The Prolia would have been $200 per month on my old insurance. I decided to wait a month, because my new insurance would kick-in. My new insurance now asks for the entire deductible of $3500 and then $900 for each injection after the deductible. I am just taking my calcium and supplements. (Add 40 cents to each dollar and that is British Pound.)

I have decided that if a medication is too expensive, then I will not use the medication. I think if The Lord intends for me to take a particular medication then it will be affordable and the right doors will open. I have Chronic Kidney Disease and Liver issues. These organ issues exclude me from a lot of meds. I am also excluded from transplants due to having autoantibodies that attacks these organs. I am relaxed about this situation because I know I am in The Lord's hands.

Autumn, on your soap box, you are so correct about money getting spent on stupid things which benefit no one. Where is the balanced budget? Where is ANY good direction? You are so correct!

Hi TRPT. I am very sorry to read your post. From where we sit over here the whole 'Obama Care' looks very exciting, I thought it meant that Healthcare would be available to all. I don't get drug companies excessive profits either. I travel a lot and I am amazed that I can buy antibiotics over the counter in Turkey for 1 sterling or in Spain for 3 sterling. The same antibiotic costs 60 sterling in Dublin. Is this Government or drug company setting the costs. I can't see it being settled in my lifetime. Best wishes. Autumm

I am an administrator for one of the Facebook myositis support groups, and I assure you that the information for the map was given by the patients voluntarily. No one is being "tracked" and information is neither solicited or taken from doctors.

An administrator from another Facebook myositis support group took on this task a couple of years ago and continues to maintain it. There are an additional 40 people who have asked to be added in the past 2 weeks which will push the number of myositis patients included on the map to over 1,000.

There could be other reasons to consider the overwhelming number of myositis patients coming from North America and England. English is the language spoken in these areas, so it is more likely that areas where English is spoken would show up in more areas than other languages.

Hi Blockparty, Interesting evaluation. I have noticed that most of the world is familiar with English. If you go to Israel, India, China, etc.. You will find signs in English as well as the native languages of a country.

India and China has billions of people. I am totally surprised that there would not be a large myositis populations in those countries too.

I must wonder what it is here that must account for the large myositis numbers?