1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Australia: Petition: Call for Change for ME patients Australia

Discussion in 'Petitions' started by Noir, Mar 14, 2022.

  1. Noir

    Noir Established Member (Voting Rights)

    Messages:
    35
    "We are looking to submit this Australian version of the Call-For-Change petition to the current Australian Disability Royal Commission and Australian Parliament to investigate the violence, neglect, abuse and exploitation currently occurring in the ME and CFS community due to outdated guidelines, policies and research."

    "We would like Australia to follow suit with the US and UK to remove harmful abusive therapies like GET & CBT being marketed as “curative treatments” and fund more biomedical research. This outdated research has also now been formally discredited by the Cochrane Institute, as shown in this paper: "Cognitive behaviour therapy for chronic fatigue syndrome" There is now no reason these treatments should remain in practice. We also hope to have more broader funding for patient led advocacy bodies and biomedical led clinics to appropriately treat patients.

    The most urgent outcome, which must be achieved without any further delay, has to be to stop harming patients."

    Anyone can sign.

    Link.
     
    sebaaa, Binkie4, Ariel and 11 others like this.
  2. Sean

    Sean Moderator Staff Member

    Messages:
    7,046
    Location:
    Australia
    Not sure Cochrane is the best source to cite.
     
    Binkie4, Ariel, Snow Leopard and 4 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    I'm quite sure it isn't the best to cite. Yes, there is an editorial note on it that says
    But it doesn't say the research has been formally discredited by Cochrane.

    And then the review is still there, in the 'Common Mental Disorders Group', and it is written to make CBT look helpful for ME/CFS, so long as people bother to complete the course.
    So, anyone who doesn't know the politics, who clicks through will be thinking, 'but you said that it has been formally discredited, but it actually looks like CBT is helpful, it just needs more research.

    And, if Cochrane ever get around to finishing the Exercise for ME/CFS review and the finding is that exercise is a useful treatment, what then? Does that mean we should believe that too, because Cochrane said it?

    I commend the people who developed the petition for their intent. But I hope that they will reconsider the wording, even if it means starting again. The NICE ME/CFS Guideline, and the CDC web pages on ME/CFS are, in my opinion, the best high credibility sources to direct people to. Any reference to Cochrane is a can of worms.
     
    Last edited: Mar 15, 2022
    sebaaa, Binkie4, Ariel and 8 others like this.
  4. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
    1,055
    Location:
    UK
    Can this text be changed? It misses the point with references to Cochrane, which should be removed. :(
     
    Binkie4, Peter Trewhitt and Sean like this.

Share This Page