Today marks our final post for the NHMRC committee’s draft report into ME/CFS ‘read-a-long’.
Firstly, if you’re looking for a comprehensive walk-through guide on how to make your submission ME/CFS Australia (SA) have put together an absolutely brilliant guide. We highly recommend it!
Over the last four weeks we’ve shared the document across three instalments, as well as giving some notes on how to form your feedback. If you would like to access any of this information, you can do so here.
We also want to let you know that if you go to view the full document on the NHMRC website, there is now a version available that is compatible with screen readers. You can access this new version here.
To end our ‘read-a-long’ we thought it would be helpful to share some key items that we are including in our feedback to the Committee. It is absolutely critical that if you use some (or all) of these that you put it into your own words.
Some of the things we liked about the report were:
- captures a variety of difficulties faced by ME/CFS patients in receiving clinical care
- describes patients’ experience with stigma
- the recommendation to adopt the Canadian Consensus Criteria (CCC) for Australian ME/CFS research and for diagnosis
- emphasis placed on Post Exertional Malaise (PEM) as a core feature of ME/CFS
- call for an update to the clinical guidelines
- the recommendation for a Targeted Call for Research (TCR)
We have also noted some areas of the report which we think need some revising, such as:
- severity of patient difficulties has been lessened throughout the report (especially for housebound/bedbound patients)
- section 4 on GET and the PACE trials minimises the concerns of the patient community
- the report does not clearly state that ME/CFS is biological. Greater emphasis should be placed on this throughout the report as a lack of belief in ME as a real biomedical illness has an enormous impact on the care that clinicians offer patients
- it is a significant harm to patients that RACGP recommendations for GET/CBT as a treatment for ME/CFS leads to patients being unable to refuse this treatment and still apply for DSP/NDIS (patients must be ‘fully treated’). This is in direct opposition to the principle of informed consent and the right of patients to refuse any treatment – especially those that carry significant risk
- the call for research should specifically exclude research which is: based on a psychosocial model of the illness; or uses exercise or CBT as primary treatments for ME/CFS
A reminder that the deadline is 11:59pm (AEDT) this Monday, 18th February.
A quick note – again, by submitting your feedback, you are providing essential information to the Committee, so we really encourage you to write something, no matter how short it is.