Clinicians and researchers are being encouraged to share their expertise with an NHMRC advisory committee exploring ways to improve clinical guidance on the diagnosis and treatment of Chronic Fatigue Syndrome (CFS).
The advisory committee has released its draft report into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is now open for public consultation.
The ME/CFS Advisory Committee was established in October 2017 and has been tasked with advising the NHMRC on key issues surrounding the diagnosis and treatment of the controversial illness.
Its report notes that CFS is a complex condition that can be highly debilitating, but there is no universally accepted case definition or diagnostic test.
“ME/CFS patients have described experiencing stigma, isolation and lack of effective or supportive care and this has been attributed to ME/CFS being a misunderstood and poorly recognised condition,” the report notes.
Treatment for ME/CFS can be fraught with difficulty for clinicians who need to grapple with variations in symptoms and the need for highly-individualised treatment plans.
Meanwhile, patient support groups have long voiced frustrations surrounding the diagnosis of CFS and treatment guidelines based on the disputed PACE trial of graded exercise therapy.
“Controversial treatments such as graded exercise therapy have created a disparity in approaches and some disengagement between patients and clinicians,” the report authors says.
The draft report from a committee chaired by thoracic oncologist Professor Kwun Fong calls for building of research capacity in CFS by funding research into the pathophysiology and aetiology of the condition.
It also calls for an updated ‘best practice’ clinical pathway in Australia since the most recent guidelines are more than a decade out of date.
“Effective clinical pathways provide consumers and clinicians with a framework of action for service delivery. They can facilitate interpretation of guidelines into a local health care context and help consumers navigate multidisciplinary teams and complex systems of care,” it says
The committee is expected to submit a final report to the NHMRC after public consultations conclude around April 2019.