Steph,

http://www.name-us.org/

Does that help?

Please don´t forget to add the last members to your undiagnosed group!

In other words, those like me who are undiagnosed, and never stop complaining



If I were in the business I would have made a movie about Alice´s life and work if she let me, as well as a more formal documentary.

Goodness knows there is more than enough interesting material just looking at one weeks worth of posts on this forum. There you have it!!

Yes it will take generations to change things with research alone but maybe only one generation with research and a film!

http://en.wikipedia.org/wiki/Rain_Man

No one is laughing at autism because of Rainman. I personally learned respect for differences here.

Adding the human element to a disease like this you increase interest and if the director and script writer are skilled at what they do then beginning awareness is just a natural effortless by-product.

http://en.wikipedia.org/wiki/As_Good_as_It_Gets

I remember being incredibly impressed with the tactful approach of the film maker and empathy and understanding for compulsive disorders.



Maybe!

I now no longer have the ME symptoms that I had a few years ago. The myasthenic symptoms overlapped with the chronic fatigue symptoms and then eventually separated. In other words I am left with only fatigable weakness symptoms in certain sets of muscles.
So just for an example, if I need to lay down during the day on the floor of my office it is not due to severe fatigue of body and brain but very specifically the trunk muscles that have reached their myasthenic collapsing point, I am no longer able to stand or sit and need just a minute or two of rest and then I am´fine´again.

What was the worst was not knowing if the constant paralyzing brain fog would ever lift. At one point it took me half an hour to make a sandwich and wrap it up because my brain could not process that much information.

I don´t think my brain is in too bad of a shape lately – all things taken into consideration

And anyway guess what started all of that in the first place?............

A VIRUS !!!!

Well, maybe this is the place to recruite people?
I don't know what you had in mind, because I cant watch the CFS movie.

I've seen something made by ME CFS patients a while ago; they all made short movies themselfs, send it to one person who knows how to make a movie out if it and out it on youtube and more. But I do not know if thats the same as this one.

I think movie idea like rainman versus documentary (most people dont want to be educated
They wankt to be entertained.)

I was also thinking perhaps Target neurology or even all med students and try to help improve diagnostic approach - it is amazing to me how technology is not being used by doctors for front end diagnosis. I know practicing medicine is an art but certainly there is a lot of opportunity to improve, for example why not have very extensive computerized patient questionnaires that could then be analyzed by software? Maybe even something as simple as an ipad app could help?

I think a big part of problem is the 'stigma' associated with invisible illnesses which makes it very easy to ignore, disbelieve or dismiss people suffering from them. Again awareness important but equally important to educate.

Not so long ago this same type of stigma was associated with homosexuality, domestic violence and rape yet there has been tremendous improvement in general acceptance, compassion over just last 20 years.

Just sharing some thoughts

I think you are right that there are certain stigma to certain diseases.

But, I don't think it has to do with them being invisible.

Most diseases and conditions are invisible-can you see diabetes? can you see blood diseases?

I think it has more to do with those diseases being poorly understood. Which creates a viscous cycle. A poorly understood disease is dismissed because it is poorly understood and then less is done to try and understand it.

You are correct!

People either want to be entertained or see something which is like a commercial.

So, a movie should either be a true work of art. (like those feature movies), in which the message you want to pass is gently hidden.

Or- very blunt (like a commercial)-a short movie with a very clear message.

http://www.youtube.com/watch?feature...klKyFMUME&NR=1

Although people tend to be suspicious of what looks like you want to sell them something.

Some messages can be passed very well by creating a contrasting message.

http://www.youtube.com/watch?v=rsP0vNPAxFs

Irony is many times a good way to make people think.

What about writing a novel?

Thanks alice, whoever thought of the second video is a creative genius!