Cast your mind back to April 2023. The Parliamentary Committee on Long COVID released their report, making 9 recommendations. One of these was to fund ME/CFS research and patient support, in particular, to implement the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council (NHMRC).
This advice was simple: update the treatment guidelines for ME/CFS. These guidelines, not updated since 2002, recommend Graded Exercise Therapy and CBT, based on now-debunked research. We know that GET causes harm in 80-85% of ME/CFS patients, and other compatible jurisdictions such as the UK have updated their guidelines to reflect this.
The 2019 report indicated it would only cost $1.15m to update these guidelines. This is a paltry amount to stop the immeasurable harm done to patients by these guidelines, and to help clinicians assist their patients with best practice, not out of date nonsense.
The Federal Government has done sweet FA with respect to most of the Long COVID Enquiries recommendations. They recently announced their priorities: they will not be funding updates to the guidelines, nor additional ME/CFS research.
This is a pathetic response and a slap in the face to the hundreds of thousands of Australians who live with ME/CFS, whether COVID acquired or otherwise.
I urge you to contact your local MP, the health Minister, Mark Butler, and Monique Ryan MP, who headed up the committee and is seeking responses to the government’s decisions. Emphasise the importance of updating the NHMRC treatment guidelines for ME/CFS and funding ME/CFS research more broadly.
monique@moniqueryan.com.au
minister.butler@health.gov.au
Or give their offices a ring.
#MECFS #MillionsMissing #LongCOVID
Chronically Siobhan 