1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 27, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    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.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    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?
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    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.
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    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...:rolleyes:
  6. Kelly

    Kelly

    Messages:
    85
    Likes:
    17
    Some mistakes may never be made right

    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.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    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.

See more popular forum discussions.

Share This Page