On Thursday 30 October, Emerge Australia hosted a ME/CFS & Long COVID Action Forum from Australian Parliament House.
The event called for action, investment and policy reform to improve the lives of people living with ME/CFS, long COVID and related energy-limiting conditions. Watch presentations from;
Professor Michael Kidd AO, Chief Medical Officer
In his welcome address Professor Michael Kidd AO, Chief Medical Officer talks to the stigma and the harrowing suffering for those living with ME/CFS, long COVID and related energy limiting conditions. He speaks of the struggle to be believed and supported, noting the impacts of lives constrained, opportunities lost and voices unheard. He recognises the scientific evidence for the genuine biological basis of these conditions and encourages us to together move from stigma to science and from silence to meaningful change.
Associate Professor Bernard Shiu, Clinical Director Banksia Medical Centre and Geelong Long COVID Clinic in Victoria, Chair RACGP Energy Living Conditions & Post-Infection Disease Working Group
A/Prof Bernard Shiu discusses how every Australian deserves access to safe, affordable, high quality healthcare and how the systems designed to help are not set up for invisible, fluctuating, complex illnesses.
Change begins with education, most clinicians were never taught how to recognise ME/CFS, so even though the condition is not rare, without training, it can feel like working in the dark. GPs may be unsure how to diagnose or investigate the patient’s symptoms. The problem is lack of education, not lack of compassion.
A/Prof Bernard Shiu called for:
- equitable access to healthcare. Telehealth is a necessity, not a luxury
- equitable access to disability supports like NDIS and DSP. These systems must recognise ME/CFS and long COVID for what they are: serious, disabling and deserving of equity.
Let’s imagine a future where a patient with ME/CFS or long COVID doesn’t have to explain their condition over and over again, because clinicians already know what it is. Let’s work together to make that future real.
Professor Chris Ponting, Chair Medical Bioinformatics University Edinburgh
Prof Chris Ponting discussed the importance of the DecodeME project and the findings so far. The use of unbiased genetics can help identify areas in the body that are involved in ME/CFS and will hopefully progress research into possible treatments for ME/CFS.
Prof Chris Ponting called on each country to have a national ME/CFS strategy due to three factors:
- High prevalence
- Large social and economic burden
- Future proofing. High probability of another pandemic in the next 25 years leading to further post infectious diseases.
View the presentations slides HERE.
Penelope McMillan, Spokesperson ME/CFS Australia
Penelope McMillan’s presentation focused on the need for those with ME/CFS to be able to access primary healthcare, particularly via Telehealth. She also spoke about the options that healthcare professionals can do, particularly around diagnosis and shortening the average time for a person with ME/CFS to gain a diagnosis.
Penelope McMillan called for:
- access to telehealth without face-to-face requirement
- adequate funded home visits
- education for all healthcare professionals as care of ME/CFS is multi disciplinary.
- research funding to underpin care to improve clinician confidence
And spoke about how this will reduce illness severity and economic burden.