She assumed it was a cold. It was 1994, and like most PhD students, Robyn Harris was tired. The outdoorsy biochemistry student pushed through.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The reality was much worse. Dr Harris had glandular fever and was later diagnosed with chronic fatigue, an illness that robbed her of energy so badly that even the rings on her fingers became an impossible weight to bear.
More than two decades, a completed thesis and several children later, Dr Harris credits much of her recovery to the support of the ACT ME/Chronic Fatigue Syndrome Society.
But the society may have to cut the hours of its liaison officer and its education for health practitioners once Self Help Organisations United Together shuts at the end of May.
SHOUT provides low-cost office space, printing and administrative resources to organisations like the ACT ME/Chronic Fatigue Society.
The not-for-profit received money under the NDIS transitional program for the past three years after decades of funding from Disability ACT.
With no certainty of whether it qualifies for long-term NDIS funds, and after an unsuccessful plea to the ACT government for $110,000, the decision was made to shut up shop.
The ACT ME/Chronic Fatigue Syndrome Society is one group of many assessing the impact of its closure.
"We really don't know how much stuff we're going to have to wind back, it will depend on the rent that we have to pay," board member Rebecca Davey, who is also on the board of SHOUT, said.
"Our major expense is our liaison officer so we're going to have to cut her time back ... The support groups may go.
"Doing GP education of any type is really expensive and we're just not going to be able to afford to do it.
"You're going to end up with Canberrans with a debilitating disease and they're not going to have GPs in the community educated on how to best manage them and provide the support they need."
Dr Harris called on the government to support SHOUT.
"What the [ACT ME/Chronic Fatigue Society] did to help me was instrumental in helping me recover," she said.
"To me, SHOUT is an organisation that is so effective and so efficient and allows so many other organisations to be effective and efficient - it'd be crazy not to fund it."
Disability Minister Rachel Stephen-Smith said: "The ACT Government remains committed to working with SHOUT and a range of other community organisations to ensure that SHOUT members are supported and that the transition to any new arrangement is as smooth as possible."
