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;
Lily Schubert, Emerge Australia Ambassador
In her powerful presentation, Lily spoke about getting sick at age 16 and following all the advice she was given by medical professionals but instead of her symptoms improving they only got worse, with her being bedbound for six years. Instead of following her dreams she disappeared into a world of doctors, pain and fatigue. She lived in silence and darkness, unable to tolerate sound or light or movement. Lily shared how she was either meet with GPs who dismissed her symptoms or were dumbfounded.
Lily Schubert called for:
- Clinical education about ME/CFS for all GPs
- More funding for research
- A coordinated national research strategy
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.
Tracey Collins, Living with ME/CFS
With her emotional presentation Tracey described her 16 years of living with severe ME/CFS and touched on the advice she was given by health professionals, which made her condition worse. She called on investment in Clinical education, particularly before the Clinical Guidelines are completed. She asked those in attendance to put themselves in the place of someone with severe ME/CFS and to take action to end the needless discrimination and suffering that people ME/CFS have endured.
Dr Mike Freelander MP, Member for Macarthur and Co-Chair of the Parliamentary Friends of ME/CFS group
In his presentation Dr Mike Freelander MP, acknowledged that the government had provided some support for ME/CFS, and that many of the recommendations from the long COVID committee’s report have not been implemented. He spoke about the efforts of Emerge Australia to raise awareness to government and committed to continue to work towards extra support for those living with ME/CFS and long COVID, especially those with severe ME/CFS, including NDIS approval. He recognised that more needs to be done regarding research and to support people with chronic conditions.
Senator Jordon Steele-John, Senator for WA and Co-Chair of the Parliamentary Friends of ME/CFS group
Senator Jordon Steele-John discussed his long history of campaigning for better supports for ME/CFS. He acknowledged the energy required for such ongoing advocacy by the community, and how difficult that is for people with ME/CFS. He reflected on the development of new clinical guidelines and how a draft is still two years away. He recognised how important the event was in allowing the community to speak directly to decision-makers and for decision-makers see the impact of ME/CFS.
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.
Zoe Simmons, Journalist, Speaker, Poet, Advocate
In her presentation Zoe Simmons spoke of the barriers people with ME/CFS face when accessing the NDIS and DSP, which are not designed to be navigated by people with energy limited conditions. She spoke of the huge burden the paperwork and decision-making is in accessing both of the programs. She shared her experience of being medically gaslit and of fat phobia.
Zoe Simmons urged decision makers to:
- Listen to the ME/CFS community
- Recognise how difficult accessing the NDIS and DSP
- Lower the barriers for access.
In her powerful closing she reminded decision makers that, anyone can become disabled or chronically ill at any time and we need a system that catches everyone.