Thank you NHMRC for recognising unmet needs in ME/CFS

In June 2019 the National Health and Medical Research Council (NHMRC) released the ME/CFS Advisory Committee Report to the CEO. This Report discusses the challenging circumstances in which Australians with ME/CFS find themselves and makes a series of recommendations about research and clinical guidance that can be found on page vi. Some of these recommendations are already funded.

As a community, people with ME/CFS and those who care for them have had their experiences validated in a way that is unprecedented. For this, we are grateful beyond measure to the NHMRC.

 

“Poor clinician-patient interaction can be seen as a form of epistemic injustice in which the patient experience is given little credibility, leading to delayed diagnosis or misdiagnosis and further harm.” (page 12)

 

“Patients have… described feeling dismissed, negatively stereotyped and stigmatised after attending health care services.” (page 12)

 

“In combination, the uncertainties in diagnosis, disease mechanisms and management approaches have contributed to patients experiencing stigma, isolation, delays in diagnosis, misdiagnosis, lack of supportive care and unintended harm.” (Executive summary, page v.)

 

“In recognising the need to address these challenges, ONHMRC established the Committee to provide advice on the status of research and clinical guidance in Australia, and on any gaps that could be recognised to improve research funding and clinical care.” (Executive summary, page v.)

 

You can read the recommendations in full on page vi. of the ME/CFS Advisory Committee Report to NHMRC Chief Executive Officer.