Put bluntly, Australians with ME/CFS are in crisis. Estimates of how many of us there are range from 92,000 to 242,000, and the absence of a more accurate figure reflects the general state of apathy regarding ME/CFS by our health authorities.
Advocacy groups such as Emerge and state based ME/CFS societies run on the smell of an oily rag. They provide excellent information and advice, but are rendered almost useless to patient groups in terms of practical assistance.
Greens Senator Scott Ludlam recently raised the question of how much Commonwealth funding goes into ME/CFS research with the Community Affairs Legislation Committee. The initial (very low) figure of $2.4 million over 14 years was quickly revised down to $1.6 million when challenged, but even this figure is debatable according to the breakdown of the funded studies on
the Emerge website.
Senator Ludlam also noted the lack of any formal training for medical professionals, nurses or allied health services to appropriately support people with ME/CFS. In practice, this results in patients having difficulty getting diagnosed, and discrimination by out-of-depth doctors acting as gatekeepers to desperately needed services. There is a lack of support in claiming the DSP (Disability Support Pension) and arranging in-home GP appointments for house and bed-bound patients. Mention you have ME/CFS to hospital staff and the issue is likely to be sidestepped or dismissed. As most people with ME/CFS have adverse reactions to medications and extended recovery times after surgical procedures, this can have deterimental effects on care.
