ME/CFS- Information on how to ensure patient safety and quality.
Dear Australian Commission on Safety and Quality in Health Care,
Background - for clarity
In 2019 the NHMRC report on ME/CFS recognised the need to replace the 2002 RACP guidelines for CFS, To date little progress has been made and the NHMRC advises that will issue guidelines for people with ME/CFS (a severely impaired subset of people with CFS) but that these guidelines may not be issued for another 2-3 years.
At the moment due to the lack of specific guidelines for ME/CFS, the RACP 2002 guidelines for CFS are being used which is causing harm to people severely affected by ME/CFS (as per repeated worldwide patient surveys).
The 2002 RACP guidelines promote the use of Graded Exercise Therapy (GET sometimes called incremental physical activity) and a rehabilitative view of ME/CFS.
The use of GET and CBT as a treatment for ME/CFS has been found to be unsafe by the UK NICE researchers and the USA Centre for Disease Control (IOM report) , the Mayo Clinic, the International Consensus Criteria (ICC) Australian researchers contributed, biomedical researchers at Griffith University, the Melbourne OMF etc..
The findings of the UK, USA. ICC contributors, exercise physiologists (measuring disability in people with ME/CFS - Workwell Foundation) and Australian biomedical researchers are consistent with each other. All reject the use of GET and CBT as a "treatment" for ME/CFS and warn of the harm of over exertion/exercise.
Information Requested
1/ I am seeking correspondence, information on what your department does/has done to ensure the safety and quality of care for people with ME/CFS until the NHMRC issues the proposed new guidelines.
2/ If you have no information specific to ME/CFS then I request a copy of the policies and practices relating to what your department recommends to ensure the safety and quality of care for people who have disabilities/medical conditions for which Australia lacks up to date guidelines .e.g. do you have a policy on the adoption of the NICE Guidelines as an interim measure?
Yours faithfully,
Julie Keys
Dear Julie,
Thank you for the below request. I am writing to confirm receipt of your email.
I am one of the FOI Officers at the Australian Commission on Safety and Quality in Health Care - we are currently reviewing our records and will get back to you.
Kind regards,
Tatiana Thurgood
Secretariat Support Officer
Australian Commission on Safety and Quality in Health Care
Level 5, 255 Elizabeth Street, Sydney NSW 2000
(02) 7232 5920 | www.safetyandquality.gov.au
[email address]
Work Days: Monday - Thursday
I acknowledge the Traditional Custodians of Australia and their continued connection to land, sea and community.
I pay my respects to Elders past, present and emerging.