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 SafetyandQualityFOI,

I'm chasing up a response to this request. Is more information needed?

Yours sincerely,

Julie Keys

Dear SafetyandQualityFOI,

Note that the request is limited to copies of information on how patient safety and quality is ensured for people with ME/CFS .

Yours sincerely,

Julie Keys