CALL FOR CHANGE for ME patients Australia
CALL FOR CHANGE for ME patients Australia
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to investigate the violence, neglect, abuse and exploitation currently occurring in the ME and CFS community due to outdated guidelines, policies and research.
YOU CAN HELP US BY:
– Signing this petition
– Sharing and encouraging researchers, charities, organisations and others to sign this petition
– Patient organisations, Clinics and researchers may back this Call for Change by emailing your name, website and logo to email@example.com we will add it to the document/submission
– Emailing your experiences of violence, neglect, abuse and exploitation to firstname.lastname@example.org these testimonies will be submitted to the disability royal commission along with this document with assistance from ‘Your Way Through’ a disability advocacy support service. - Note - when submitting your story please let us know if you wish to remain anonymous or not.”
– Alternatively if you wish to make a private submission to the disability royal commission you can include the call for change document to your submission and we recommend contacting ‘Your Story Legal Aid’ ME/CFS Australia also have a guide and tips on how to make a private submission here
In doing this, we hope to right the wrongs of the past and ensure proper care and support for a desperately deserving patient group. We also hope for substantial investment in biomedical research in order to advance the field, and medical education.
The original version of this Call-For-Change petition was previously signed by twelve ME and CFS organisations from the UK, Ireland, Europe, the USA, Canada and South Africa, doctors, scientists, academics, patients, carers and garnered over 9,230 individual signatures.
Unfortunately, despite this and other efforts from the patient community, The Royal Australian College of General Practitioners (RACGP) Royal Australasian College of Practitioners (RACP), Australian Medical Association, Exercise and Sport Science Australia (ESSA) Medical Journal of Australia (MJA), The Royal Australian and New Zealand College of Psychiatrists and the NHMRC continue to follow outdated guidelines and ignore new and current biomedical research.
Therefore they do not seem to realise nor want to acknowledge the harm that is occurring for ME and CFS patients and appear to not be following the first principle of medical care which is to “first do no harm”.
We really need your endorsement to show the Australian government that these changes are urgently needed for the safety of ME and CFS patients.
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.
In summary, we need:
An open and transparent protocol and assessment system that is fair to ME patients, recognises their functional limitations and does not further damage their fragile health.
Completely impartial assessors, with no possible conflict of interest between their role and their remuneration.
Thorough review of any evidence used. Only good quality evidence must be allowed. Simply quoting the old debunked NICE/RACP and MJA guidelines is no longer sufficient, nor should ME patients continue to be denied desperately needed social welfare for over two more years until the new guidelines become available.
All assessments to be routinely recorded and made accessible to claimants, at no cost to them, in case of dispute.
Fair reassessment of all cases of dispute and due benefits repaid retrospectively.
Public awareness campaign to reeducate researchers, medios, insurance agencies, allied health, the public and government departments on the validity and seriousness of the illness and be very clear it's not a psychosocial or somatoform disorder.
Patient/community lead input on guidelines or assessments that will directly affect us
The full Call for Change submission can be viewed and downloaded here, though signatures are still being added.
STOP THE HARM, STIGMA & ABUSE!
We have received explicit permission from Dr Hng, the original creator of this document, to edit and update this Call-For-Change petition to make it relevant to Australian-contexts. However, please note all information from the original document included and our additions are relevant to Australia.