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Dr David S. Bell Newsletter
This is doing email rounds at the moment, and it was an interesting read.
I found this part especially interesting (vol2/issue2):
Quote:The most effective way to continue the apathy which the ME/CFS world experiences is to get into more arguments with ourselves. Lets condemn the CFIDS Association or the NCF. Lets fight over the name, lets...
One thing that ME/CFS patients have never learned is that they do not have enough energy to fight each other and do something constructive. So, after a few years they burn out and disappear. Not many years ago there were lots of state organizations, hundreds of support groups. Now? Everything is so quiet. It's not about money, it's about will and determination.
Now this is a US publication, but I wonder how common this is? I've often pondered how much more awareness could be raised if we stopped getting stuck on the little things and just went out and got on with it.
http://www.davidsbell.com/DSBNewsletters.htm
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Dr David S. Bell Newsletter
Very interesting indeed.
And from what I've heard and read, it is fairly common, here in Australia too.
"Let's argue about the name"
"Let's bag the state/national/local CFS association/support group, what do they really do for me?"
None of those are my opinions of course, just an attitude I've seen in quite a few people, mostly online.
Instead of fighting each other over names, or whinging about what a support group or association is doing for someone as an individual, it would be better to fight for awareness and research.
Dr David S. Bell Newsletter
Quote:Instead of fighting each other over names, or whinging about what a support group or association is doing for someone as an individual, it would be better to fight for awareness and research.
Agreed. Unfortunately, people can get too caught up in the little things