Where are the invisible? An interactive map of pwME

Chandelier

Senior Member (Voting Rights)
I came across this link and the more I think about it, the more I like it.

An interactive map which makes the invisible pwME epidemic visible as an interesting advocacy/art project.

I‘m wondering if this concept could be further extended to be useful for e.g. study recruitment?
Add a questionnaire for the Canadian criteria, maybe funcap for assessing the severity and then let registered scientists automatically contact users within a given region/radius.
 
I‘m wondering if this concept could be further extended to be useful for e.g. study recruitment?
The sample size is miniscule. Each blob is for a named individual. I think it's just a way of illustrating where a few people responding to some sort of survey or belonging to an organisation live. It is interesting in the sense that it shows their respondents are mostly in Europe and North America, but it is too small a sample, I think, for advocacy.

Also I'm suspicious about the choice to list only people diagnosed with ME, not those diagnosed with ME/CFS or CFS. There are some organisations which insist only the name and definition they favour have 'real ME'.
 
The sample size is miniscule. Each blob is for a named individual. I think it's just a way of illustrating where a few people responding to some sort of survey or belonging to an organisation live.
I agree, in it‘s current state it’s not useful.

The fantasy this project induced in me is that maybe it is possible to create a similar project that
a) makes the millions of hidden pwME visible
b) could be used for study recruitment

Let‘s say an artist would enhance this idea of an interactive map
and manage to go viral with it
and good enough diagnostic tests were applied to the pwME signing up… this could turn out very interesting.

But, of course, I‘m daydreaming aloud
 
I wish my memory was better, but I seem to recollect I had signed up for something like this some years ago, aimed at providing a geographical record of people with ME and to put potential research subjects into touch with researchers who were recruiting.

At the time I seem to recollect I could not get the bit where I could see the maps and see the lists of research projects currently recruiting to work, so I gave up on interacting with it. This must have been several years pre Covid. I don’t think I have had any email updates about this in a good number of years.
 
I wish my memory was better, but I seem to recollect I had signed up for something like this some years ago, aimed at providing a geographical record of people with ME and to put potential research subjects into touch with researchers who were recruiting.

At the time I seem to recollect I could not get the bit where I could see the maps and see the lists of research projects currently recruiting to work, so I gave up on interacting with it. This must have been several years pre Covid. I don’t think I have had any email updates about this in a good number of years.
Maybe StudyME? Though this doesn't seem to be a strict database of people with ME/CFS. I think you just provide your location and select which kinds of studies you want to be notified about.
 
"People with Myalgic Encephalomyelitis not CFS, IOM/SEID, ME/CFS"
I've got a feeling this comes from The Nightingale Research Foundation, now known as the Nightingale Continuum since the founder passed away. I follow their Facebook as they do post some interesting things still, but they came up with an alternate definition of ME, separating it entirely from the term CFS. Even looked into categorising subtypes I think?
 
I've got a feeling this comes from The Nightingale Research Foundation, now known as the Nightingale Continuum since the founder passed away. I follow their Facebook as they do post some interesting things still, but they came up with an alternate definition of ME, separating it entirely from the term CFS. Even looked into categorising subtypes I think?
They have been on my feed too, some brilliant stuff then some questionable stuff.
 
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