Financial investment into ME/CFS is urgently needed

Financial investment into ME/CFS is urgently needed

Sign

Ensure knowledge from ME/CFS research and the emerging field of Long COVID is shared and integrated

A high degree of similarity and strong links between ME/CFS and Long COVID offer opportunities for researchers to collaborate.   

Emerge Australia, in partnership with LaTrobe University, manages Australia’s only ME/CFS Biobank. The opportunity to develop a Long COVID Biobank at LaTrobe that would work on cross matching ME/CFS and Long COVID samples to identify the molecular and cellular signatures of both conditions allowing researchers to compare patient cohorts, would add significant knowledge to patterns of post viral/infectious illness ...

Ensure knowledge from ME/CFS research and the emerging field of Long COVID is shared and integrated

A high degree of similarity and strong links between ME/CFS and Long COVID offer opportunities for researchers to collaborate.   

Emerge Australia, in partnership with LaTrobe University, manages Australia’s only ME/CFS Biobank. The opportunity to develop a Long COVID Biobank at LaTrobe that would work on cross matching ME/CFS and Long COVID samples to identify the molecular and cellular signatures of both conditions allowing researchers to compare patient cohorts, would add significant knowledge to patterns of post viral/infectious illness and have the potential to inform the evidence base for earlier diagnosis and better management of both conditions.   

Any new research would be more efficient and effective if researchers focussed on both ME/CFS and Long COVID to design, conduct and analyse evidence. If treatments are found that help people with Long COVID, these are potentially applicable for people with ME/CFS.[1] 

a)  People with ME/CFS should be used as comparison cohorts to people with Long COVID, in addition to healthy controls.

b)   Researchers should partner with ME/CFS and Long COVID patients to design, conduct and analyse research

Underfunded biomedical research lacking patient codesign has contributed to poor health and wellbeing outcomes experienced by post-viral patients especially those with ME/CFS. A lack of funding has also contributed to a mistrustful relationship between patients, researchers, and clinicians. ME/CFS and Long COVD research must involve patients in codesign and recruitment to ensure research efforts are not wasted and delivery of relevant and better outcomes is achieved.

$2,480,000 is required over 3 years for ME/CFS, Long COVID and post-viral research into patterns of illness and novel and evidence supported treatments, informed by current research.

[1] Wong and Weitzer. ‘Long COVID and Myalgic Encephalomyelitis’.

 

+

Financial investment into ME/CFS is urgently needed

A tsunami of post-viral disease is about to hit Australia. Use the link below to let your representatives in Canberra know that you support this proposal and that Australians with ME/CFS matter. Thank you!

 

Since lodging our pre-budget submission in November last year, not only has the government changed but the needs of Australians living with ME/CFS and Long COVID have too.

Emerge Australia has developed a comprehensive plan and now needs your support in asking the new Labor government for financial investment over the next three years to implement changes that have the potential to transform patient’s lives:

  1. Educate Australia’s health care practitioners to provide appropriate, evidence-based, and timely diagnosis and management of people with ME/CFS and Long COVID
  2. Optimal Care Referral Pathway (OCRP )to be developed to deliver patient education, navigation, and the multi-disciplinary support of allied health professionals to deliver equitable, co-ordinated care via Emerge Australia Telehealth 
  3. Update Australia’s outdated Clinical Guidelines to reflect internationally agreed safe and best practice care for people with ME/CFS
  4. Fund New biomedical research into  the diagnosis and treatment of ME/CFS Establish a Long COVID Biobank to collaborate with Emerge Australia's existing Biobank at La Trobe University
  5. Improve access to NDIS/DSP - remove barriers to entry for people with ME/CFS

How we use the data you enter on this form

Please view our privacy policy:

https://www.emerge.org.au/privacy-policy

 

Do Gooder (the advocacy platform powering this online action) processes personal information from you that you enter on this form so that we can provide the functions and related services to you and The Campaigner (the organisation responsible for this online action) for their legitimate purposes, including possibly exporting it to other systems, and to effectively respond to enquiries and communications related to those services.

Specifically when you enter:

  • Your location data (residential address or postcode) it is used to locate your elected representative, to pre-populate your email signature and to provide The Campaigner with a visualisation of the location of the support for this campaign.

  • All other data you may enter, including your email address, name, telephone number, commentary and so on is used by The Campaigner to advocate for the campaign’s goals and where required may be sent to the target of the campaign.

The data collected by Do Gooder is also used by us in aggregate form to improve the service and may be held on your behalf outside your country of residence by our third party service providers. These providers are bound by contract to only use personal information on our behalf, in accordance with agreed terms. While the privacy laws of the country in which personal information is stored or transferred may be different from those in your country, we will always have safeguards in place when storing or transferring personal information. We will never sell, rent, loan or in any other way pass your information on to other parties other than to provide this service to you and The Campaigner.

The personal information collected by Do Gooder is held subject to a Data Processing Agreement between Do Gooder and The Campaigner in compliance with the EU's GDPR and Australian law.

Learn more about our privacy policy here

How is my data used?