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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

I Need information about CAA right now

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 6, 2014.

  1. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,228
    Los Angeles, USA
    I'd like to contact IOM (or anyone else can do it) and show them the annoucement where CAA said they are no longer a patient group. Does anyone have a link to that announcement.
    Izola likes this.
  2. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,228
    Los Angeles, USA
    Gadzooks. My thread title is not very polite. Sorry about that. Guess I'm more flustered than usual. I've got to calm down.
    Izola likes this.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,935
    Likes:
    4,905
    Sth Australia
    lol.. Ive been like that too today (thou not here).
  4. Nielk

    Nielk

    Messages:
    5,239
    Likes:
    5,131
    Queens, NY
  5. lnester7

    lnester7 Seven

    Messages:
    1,219
    Likes:
    1,094
    USA
    I don't know if it is my English but what does this mean for us??? They are dissolving the group or what???
  6. caledonia

    caledonia

    Messages:
    2,875
    Likes:
    1,462
    Cincinnati, OH, USA
    No that was a couple years ago. Yet despite what they said, they are once again acting like a patient group. Two-faced traitors.
    Iquitos, lnester7 and Nielk like this.
  7. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,228
    Los Angeles, USA
  8. jspotila

    jspotila Senior Member

    Messages:
    1,069
    Likes:
    587
    The Association had already terminated the CDC contracts prior to the petition. The decision not to compete for the physician education money from CDC was made in 2008. And that decision was made because the Association did not want to support the CDC's increasingly psychogenic flavor to the program. I was on the Association's Board at the time.
    Persimmon and Firestormm like this.
  9. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,228
    Los Angeles, USA
    It would be nice if they put the same level of energy into publicly denouncing the CDC information as they did when they were publicly promoting the CDC website and Oxford Criteria studies. The difference in levels of publicity leaves a feeling that they have not really changed, and they are simply playing a different angle now.
  10. Nielk

    Nielk

    Messages:
    5,239
    Likes:
    5,131
    Queens, NY
    In March of 2011, the CAA stated the following:

    This is a pretty clear message that they have become an organization focused on research for CFS.
    This is fine as they have a right to choose their philosophy and focus but, don't confuse the patient community. Don't act as a representative of the patient community...because you are not. There is no paid membership to the CAA any longer. They are basically no different than any other organization doing research into CFS like the OMI or Whittmore Peterson Institute. Patients do not expect those other organization to speak the voice of the patients. I think that it is time for the CAA to acknowledge their limitations and the fact that they do not speak or represent the patient community any longer.
    Persimmon likes this.
  11. Nielk

    Nielk

    Messages:
    5,239
    Likes:
    5,131
    Queens, NY
    Why has the CAA been invited to speak at the IOM meeting Jan 27th as a patient representative?....when they clearly are not.

    Have the following organizations been invited?

    Simmaron Research
    Whittmore Peterson Institute
    Open Medicine Institute
    The Mt. Simai ME/CFS Center
    Nova Southeastern University CF Center
    Hunter-Hopkins Center
    The Fatigue Consultation Clinin- Utah
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    957
    Likes:
    414
    Brisbane, Aust
    Advocacy was relegated as secondary to research in this missive from the CAA. More importantly, the article clearly outlines the new 'research first' direction for the CAA.

    Clearly there is potential conflict between the two roles of advocacy and research, since advocacy is goal oriented towards putting patients first, and research is subject to funding contraints, ie chase the dollars to survive.

    Source:
  13. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,228
    Los Angeles, USA
    I thought of a way to do this without being so negative. I will point out that CAA is a research group and that they should invite the other known research groups. I'll include the list Nielk posted.
  14. Izola

    Izola Senior Member

    Messages:
    350
    Likes:
    329
    :thumbsup: :) Andrew: I love the way you titled your thread, true, action evoking, and to the point. :balloons::balloons: Iz

    Attached Files:

See more popular forum discussions.

Share This Page