Petition–CAA Does Not Speak For ME

Discussion in 'Fibromyalgia Main Forum' started by tansy, Feb 27, 2011.

  1. tansy

    tansy New Member

    "Over the last few decades, we have implored the CFIDS Association of America to advocate for the illness that was given the “Chronic Fatigue Syndrome” label by the Holmes Committee … the outbreak of what was most likely Myalgic Encephalomyelitis in Incline Village, Nevada.

    Instead, the CFIDS Association of America has maintained a steady inclination towards advocating for the CDC’s version of a mythical cohort of chronically fatigued people. The CFIDS Association of America has failed repeatedly to portray our illness as the devastating entity that it is, choosing instead the middle road and collaboration with the false science that has been built around the many fatiguing illnesses that have been lumped together under the CDC’s “CFS” umbrella."...........


    and the petition can be signed at

    Hillary Johnson is supporting this petition and the UK based petition calling for resignations at Action for ME. You can read Hillary's comment on the CAA petition at the website above.

    [This Message was Edited on 02/28/2011]
  2. quanked

    quanked Member

    I was not aware of the issues with CAA. Your link led me to and down an interesting path.

    It was heartening to find others fired up about our plight with CFIDS/ME.

    I am so wiped out or I would write more. Thanks again for taking the time to inform us.
  3. tansy

    tansy New Member

    Hi Quanked. What many do not realise is that some of the organisations they trust to speak and act on their behalfs have been persuing their own agendas. It's contributed to the confusion and difficulties patients face when seaking treatments or applying for sickness and disability payments.

    There has been a concerted effort on the part of patient advocates worldwide to work together. Until we have the right people representing us the problems we have now will continue, hence these petitions.

    tc, Tansy
  4. tansy

    tansy New Member

    On another forum there is a poll asking it's members how they feel about the CAA. So far 153 have voted, 143 agreed the CAA needs to change direction and leadership.
  5. tansy

    tansy New Member
  6. tansy

    tansy New Member

    See this letter to The Lancet and how it compares with Kim McCleary's comment on the PACE Trial to the media.
  7. tansy

    tansy New Member

    A Guest Commentary by Lisa Petrison, PhD
  8. Slayadragon

    Slayadragon New Member

    Thanks much for posting this, Tansy!

    Best, Lisa Petrison