Article: The CFIDS Association: the Last Ten Years - An Overview

You can view the page at http://forums.aboutmecfs.org/content.php?349-CFIDS-Association-the-last-Ten-Years-cfs-advocacy-phoenix-rising

 

the placement of an article on GET by Dr. Peter White would surface again and again on the Forums while the more prominent placement of Dr. Peterson and other more acceptable physicians and treatments in the same paper would be ignored.

If I didn't know better, your bringing this up again would seem to me like trolling for luls (ie baiting).
Endorsements of Peter White and his GET lies are absolutely, categorically unacceptable by a supposed patient-advocacy org. End of story.

 

If you read it in context Justin what I was trying to say is that the CAA underestimated what a touchy situation that was - which your following comment amply demonstrated. I think they probably recognize that it was a mistake and I imagine he will not appear in their publications anymore.

What is a lul?

 

Lulz are like evil lols. They're the laffs that trolls get by baiting people on internet discussions- like posting pictures of kittens in a blender on a cat lovers site.

 

Thanks. I know mentioning Peter White is like scratching ones nails on a chalkboard for many people but I promise I did not put him in to draw a reaction...

 

Some mistakes may never be made right

Thanks. I know mentioning Peter White is like scratching ones nails on a chalkboard for many people but I promise I did not put him in to draw a reaction...

Just an observation: Politicians also know this. Unfortunately, some mistakes are ones that dog you until the end of time - in the case of the CAA Peter White is one such example. Sometimes, for many people, it comes down to - apology not accepted.

The question could also be how much "right" has to be done to make it right. Everyone has to answer that for themselves.

 

Just an observation: Politicians also know this. Unfortunately, some mistakes are ones that dog you until the end of time - in the case of the CAA Peter White is one such example. Sometimes, for many people, it comes down to - apology not accepted.

The question could also be how much "right" has to be done to make it right. Everyone has to answer that for themselves.

Agreed. I think the CAA unwittingly crossed a line there and with the CDC Toolkit and probably the name change ( and probably other places - it's hard to know). For some people working with the CDC at all was crossing the line. For me - they got a expensive media program rolling and they got more recognition for the disorder - and I thought those were good things.

I know the Vermont CFIDS organization was able to some legislation passed because, believe it or not, of the changes to the CDC website that occurred as part of that campaign. Maybe its because I have low expectations of the CDC that I'm was not disturbed as others...I never expected them to put anything in their toolkit that wasn't based on clinical trials - and I've always expected change to be very slow there but I do get how disappointing it was.