A national advocacy body for chronic fatigue sufferers has called on the federal government to urgently unlock research and funding into the condition, a year after a parliamentary committee recommended the moves.

Emerge Australia CEO Anne Wilson said the group would travel to Canberra on Wednesday to push for funding to be made available for the thousands living with Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

"The ME/CFS community's suffering is being compounded on all levels with persistent cost of living pressures adding financial stresses to patients' daily bio-psycho-social struggles," Ms Wilson said in a statement on Sunday.

"It is a matter of urgency for Australia to update its clinical guidelines for ME/CFS, to ensure Australian ME/CFS patients have access to the best possible care, based on current understanding of the disease and latest evidence."

She said almost a year had passed since the parliamentary committee urged more funding be made available for ME/CFS research and patient support.

The final report of the committee, set up to examine Long COVID, made nine recommendations including the establishment of a nationally co-ordinated research program into the condition.

Other recommendations included setting up a national database for COVID-19, which would be run by a future Centre for Disease Control.

It also called for a better vaccination strategy for COVID, along with regular reviews by the Pharmaceutical Benefits Advisory Committee into antiviral treatments.

Ms Wilson said those living with ME/CFS were doing it especially tough at present given "the cost-of-living spiralling for food, housing and services".

"There is an estimated 250,000 Australians with ME/CFS and around 400,000 with Long COVID and numbers are increasing," she said.