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- 9
In early January, after learning of the latest cruelties committed against Karina Hansen, my partner and I resolved to do something.
We drafted a flyer and submitted it to Justice for Karina. About a week later they replied positively but asked us to hold off until a development they weren't at liberty to reveal unfolded. This development was the potential involvement of Nigel Speight, the pediatric M.E. specialist, invited by the Danish M.E. association to give a second opinion.
Using this new information, we tweaked the flyer and it's now ready to be used.
One of the things that has bothered both of us over the couple of decades that we've been addressing M.E. is that we are always playing defense, doing damage control, arguing using our opponent's terms and on their terrain. This was probably inevitable, at least to some degree and this is not the place to debate the issue, but we decided to adopt a tone that would suggest that the authorities in Denmark and at Hammel were backward, reactionary,and headed to the dustbin of history.
Now, we are not blinded by wishful thinking. The situation in the U.S., or anywhere else for that matter, is nowhere near as "progressive" as our tone might imply. But the CDC has offered Karina's case a major opportunity by explicitly looking for patients that fit her profile. It would be a waste not to use this.
In addition, there is a good deal of science on the horizon that justifies our assertion at the end of the document.
How this flyer can be used:
1)Simply put it in an envelope and mail it to one or more of the Danish outposts in your country, accompanied by a note or not. The purpose is to make them aware that their pr problems go beyond a dead giraffe. Email is OK too.
2)Make copies of the flyer and distribute them in front of various Danish outposts in your country. This of course is dependent on the state of your health. NO HEROICS.
By the way, the flyer looks fine in black and white.
3)We would like to start with governmental offices but distribution of the flyer really can extend beyond these targets. Human rights organizations, major foundations like the Ford foundation, other scandinavian countries, Danish cultural events, or your local Soren Kierkegaard Fear and Trembling festival.
One of the offices I hope somebody will leaflet is the Innovation Center Denmark, Silicon Valley, 200 Page Mill Road, Palo Alto, CA 94306. A note to them could include a reference to institutions doing new and technically sophisticated M.E. work in their neighborhood: the Open Medicine Institute, http://openmedicineinstitute.org/about/overview/, and the March Stanford conference, http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf. The video on the Innovation Center Denmark site is filled with the disruptive technology bleeding edge blah blah. I am sure that they do not want to be associated with backward thinking.
Because of reasons of health and time, neither of us can oversee this. We conceived it as a free form exercise, embodying the maximum amount of choice in how it was executed.
So, it's really up to all of us to make it clear that the treatment of Karina is intolerable. This is one way we can make our voices heard.
Dropbox link to the flyer:
https://www.dropbox.com/s/ca3xvb924vipir1/Karina Hansen .pdf
We drafted a flyer and submitted it to Justice for Karina. About a week later they replied positively but asked us to hold off until a development they weren't at liberty to reveal unfolded. This development was the potential involvement of Nigel Speight, the pediatric M.E. specialist, invited by the Danish M.E. association to give a second opinion.
Using this new information, we tweaked the flyer and it's now ready to be used.
One of the things that has bothered both of us over the couple of decades that we've been addressing M.E. is that we are always playing defense, doing damage control, arguing using our opponent's terms and on their terrain. This was probably inevitable, at least to some degree and this is not the place to debate the issue, but we decided to adopt a tone that would suggest that the authorities in Denmark and at Hammel were backward, reactionary,and headed to the dustbin of history.
Now, we are not blinded by wishful thinking. The situation in the U.S., or anywhere else for that matter, is nowhere near as "progressive" as our tone might imply. But the CDC has offered Karina's case a major opportunity by explicitly looking for patients that fit her profile. It would be a waste not to use this.
In addition, there is a good deal of science on the horizon that justifies our assertion at the end of the document.
How this flyer can be used:
1)Simply put it in an envelope and mail it to one or more of the Danish outposts in your country, accompanied by a note or not. The purpose is to make them aware that their pr problems go beyond a dead giraffe. Email is OK too.
2)Make copies of the flyer and distribute them in front of various Danish outposts in your country. This of course is dependent on the state of your health. NO HEROICS.
By the way, the flyer looks fine in black and white.
3)We would like to start with governmental offices but distribution of the flyer really can extend beyond these targets. Human rights organizations, major foundations like the Ford foundation, other scandinavian countries, Danish cultural events, or your local Soren Kierkegaard Fear and Trembling festival.
One of the offices I hope somebody will leaflet is the Innovation Center Denmark, Silicon Valley, 200 Page Mill Road, Palo Alto, CA 94306. A note to them could include a reference to institutions doing new and technically sophisticated M.E. work in their neighborhood: the Open Medicine Institute, http://openmedicineinstitute.org/about/overview/, and the March Stanford conference, http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf. The video on the Innovation Center Denmark site is filled with the disruptive technology bleeding edge blah blah. I am sure that they do not want to be associated with backward thinking.
Because of reasons of health and time, neither of us can oversee this. We conceived it as a free form exercise, embodying the maximum amount of choice in how it was executed.
So, it's really up to all of us to make it clear that the treatment of Karina is intolerable. This is one way we can make our voices heard.
Dropbox link to the flyer:
https://www.dropbox.com/s/ca3xvb924vipir1/Karina Hansen .pdf
