If you woke up today with chronic pain, fatigue, dizziness, nausea and spatial disorientation, just getting out of bed would be a challenge. What if you made it to the doctor only to be told there was no cure, some people might think it was “all in your head”, and there was perhaps not much help out there. This appears to be the story for thousands of chronic fatigue suffers in Australia.

OurSay user Peter Evans spoke of this “disability discrimination” for the Grill the Independents forum, which gives people the chance to post, vote and comment on questions that will be asked to the lower house independents by Crikey next month. Evan’s question is currently number two:

“ME (Myalgic Encephalomyelitis), sometimes derogatorily referred to as chronic fatigue syndrome, affects about 90,000 Australians on current prevalence rates. It can be lifelong, severe to the point of needing help with personal care and costs the community hundreds of millions of dollars a year. Despite this, the federal government through the National Health and Medical Research Council has only ever funded one significant medical research project into the illness. Why is more not being done?”

The Australian government might be sensitive to the plight of those with a disability, but when it comes to providing real monetary support to organisations and research facilities that deal with lesser-known conditions, that sympathy could dry up. To find out more, Crikey contacted OurSay user and commenter Annie Wilson, a former teacher who was forced to leave the workforce in order to care for her 13-year-old child who suffers from ME/CFS.

“It just really frustrates me that there is a complete lack of awareness about what to do. So little is known, there is no clear evidence, we were just left with the diagnosis, and off you go,” Wilson said.

She explained that it was only after she started her own blog and began researching treatments in the US that she came across a medication that might help to ease her daughters incapacitating symptoms. “Schools have no idea what’s actually going on in her body. As a parent I am trying to educate myself and educate others at the same time.”

Wilson spoke of the severe lag in government funding towards research on ME/CFS and described how difficult it was to lobby for action when you or your child was affected. “It’s hard for some to even look at a computer screen for more than five minutes,” she said.

Since 2000, the NHMRC has given $1.4 million to research projects into ME/CFS, compared to $25.1 million for Juvenile Diabetes Research or $48.4 million towards the national GP Asthma Initiative in 2001.

Long-term ME/CFS sufferer Leah Jasmine, who also commented on OurSay, believes the government’s reluctance to acknowledge ME/CFS as a valid disability which impairs the lives of so many, reflects their general lack of interest in dealing with this complex and highly individualised illness.

“You call up asking for help only to discover the people with ME/CFS are not on the list for help. It’s just not good enough,” Jasmine said.

When Jasmine became ill with ME/CFS at four years old, doctors literally shrugged their shoulders and told her parents that she had “a rare as yet undiagnosed cancer” and would be unlikely to live beyond her eighth birthday. She says that even now it takes on average five years to diagnose the disease, which means that there could be thousands of sufferers living with ME/CFS in Australia without access to vital treatment services.

Jasmine says that ME/CFS is in fact an umbrella diagnosis that is indicative of the universal confusion and lack of knowledge about its neurological basis. She explains that key medical bodies withhold their findings because they want to be the first to discover a “cure” in order to claim back money for their research. “There is no unified research body, which is what is needed to put all the pieces of the puzzle together,” she said.

According to a speech by Christine Hunter, whose 19 year old daughter Alison died from the disease, the shift to the name “Chronic Fatigue Syndrome” in 1988 has encouraged the dismissal, scorn and medical neglect so often endured by people with ME/CFS who have sometimes been told the symptoms are all in their head.

“The emphasis of ‘fatigue’ (weariness) at the expense of the cardinal neurological, gastrointestinal, cardiac and myoarthralgic features trivialises the substantial disability of ME. Often sufferers are bound to their bed or a wheel chair, requiring 24 hour care,” Hunter said in the speech.

Crikey contacted the Australian Medical Association, who said that they did not have a specific policy on ME/CFS.

The three most popular questions from the OurSay forum will be put to the independents on September 12 by Crikey’s Canberra correspondent Bernard Keane. Entries and voting closes at 5pm on September 7.