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Parliamentary Friends for ME/CFS

Emerge Australia along with members of the ME/CFS community and key stakeholders met in Canberra on Tuesday June 13th for the much awaited launch of the Parliamentary Friends of ME/CFS Group.

The cross-party group, co-chaired by Senator Jordon Steele-John and Maria Vamvakinou MP, will provide a non-partisan forum for MPs to speak with advocates, researchers and patients to further the interests of people living with ME/CFS.

The launch at Parliament House had one of the largest attendances for any Parliamentary Friends group, with over 200 people in attendance, both in person and online. Members of Parliament who were in attendance included the co-chairs Senator Jordon Steele-John and Maria Vamvakinou MP, Hon Ged Kearney MP – Assistant Minister for Health and Aged Care, Dr Michelle Ananda-Rajah MP, Steve Georganas MP, Kylea Tink MP, Russell Broadbent MP among others. Several other MPs who were unable to attend sent their ministerial advisors to the event. Departmental representatives representing the area of Chronic and Complex Conditions were also in attendance.

A group of people with ME/CFS sitting at a table in front of televisions.
A group of people with ME/CFS sitting at a table in a conference room.

Renowned journalist Sophie Scott OAM hosted the event calling on government fund new clinical guidelines for ME/CFS.  This sentiment was repeated by all speakers highlighting that the current 2002 clinical guidelines redundant and make diagnosis of ME/CFS difficult for clinicians noting they include treatments that are now internationally regarded as causing harm in some patients.  

The three main speakers at the event were Andrew Bretherton a patient from Call for Change Australia, Emerge Australia’s CEO Anne Wilson and Penelope McMillan from ME/CFS Australia. All three speakers spoke of the hardships faced by people living with ME/CFS, not only in gaining access to evidence based clinical care, but also in coping with the disbelief and stigma they face from the medical profession.

Anne Wilson gave an impassioned speech that outlined the five key priority actions that Government needed to focus to create change:

  1. GP education. This will help reduce stigma, increase early diagnosis and improve access to appropriate treatment. 
  2. The need for updated clinical guidelines as Australia is far behind many countries around the world, with Australia’s clinical guidelines being 21 years old. 
  3. Optimal Care Referral pathways, to ensure that people living with ME/CFS have access to appropriate community and allied healthcare.
  4. Funding for research. This has been neglected for decades and has resulted in a lack of sufficient knowledge of the condition, no biomarkers, poor treatment options.
  5. Advocating to NDIA to improve access to NDIS. 

“People with ME/CFS matter. They are being left out and this must change Emerge Australia Chief Executive Officer Anne Wilson said.

The event was unable to be recorded, but please watch the closing remarks of Anne Wilson’s speech calling on Government to act now – because it is time for change. 

Emerge Australia live tweeted the event click here to read the full thread. 

Anne Wilson’s full speech can be read here.

We are delighted to share Penelope McMillan’s great presentation, noting the technical challenges she so gracefully navigated on the day. Here it is – thank you Penelope!

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