Help make a difference. Because people with ME/CFS matter.

Help make a difference. Because people with ME/CFS matter.

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A tsunami of post-viral disease is about to hit Australia.

People with ME/CFS are already drowning.

Australia must prepare now for the forthcoming economic, health and social impacts of Long COVID. Because people living with ME/CFS matter. 

Over 250,000 Australians already live with ME/CFS, a debilitating post-viral disease that leaves many unable to work, housebound or bedbound, and costs our economy over $14BN a year.

A Deakin University study suggests up to 325,000 more may develop Long COVID, described by health experts as ‘strikingly similar’ to ME/CFS in its symptoms, pathology and devastating impact ...

A tsunami of post-viral disease is about to hit Australia.

People with ME/CFS are already drowning.

Australia must prepare now for the forthcoming economic, health and social impacts of Long COVID. Because people living with ME/CFS matter. 

Over 250,000 Australians already live with ME/CFS, a debilitating post-viral disease that leaves many unable to work, housebound or bedbound, and costs our economy over $14BN a year.

A Deakin University study suggests up to 325,000 more may develop Long COVID, described by health experts as ‘strikingly similar’ to ME/CFS in its symptoms, pathology and devastating impact on people’s lives. That’s almost 600,000 Australians who could soon be living with post-viral diseases.

Our health system has long struggled to diagnose, manage and create health pathways for those with ME/CFS. We are nowhere near prepared for the number of Australians with post-viral disease to more than double in just a few months, and nowhere near ready for the impact it will have on our health services, workforce and the economy.

Read the State of the Nation: Because people with ME/CFS matter

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Educate GPs about ME/CFS

Lend your voice to support the push to increase funding for specialised ME/CFS education for Australian based GPs. 

There is currently no known cure for ME/CFS, nor are there evidence-based treatments proven to be effective.

Research estimates 90% of people with ME/CFS are undiagnosed. Many Australian GPs lack the knowledge and confidence to diagnose ME/CFS, and to advise on appropriate symptom management techniques once diagnosis does occur. This has significant implications for patient care, and can lead to symptoms worsening over time.

A comprehensive GP Education program has already been developed by Emerge Australia but requires significant, long-term investment to implement.

Sign our petition encouraging the newly elected government to invest in ME/CFS. 

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) strongly advocate that Australian GPs are provided with up-to-date education about diagnosis and safe management of this disabling disease. Current underdiagnosis, misdiagnosis, disbelief and inappropriate management from GPs prevents patients from receiving correct care.

Research estimates 90% of people with ME/CFS are undiagnosed [1]. GPs often lack knowledge and confidence in diagnosing the disease [2]. Emerge Australia’s 2019 Health and Wellbeing Survey of people with ME/CFS found:

  • 48% said their GP was either poorly or very poorly informed about ME/CFS  
  • 60% were diagnosed within 2 years, while the remainder waited anywhere from 3 to 10 years  
  • 73% said lack of knowledge from their healthcare provider was an obstacle to accessing healthcare [3].

Sadly, nothing has changed since 2019.

We, the undersigned, demand equitable and safe care and management from GPs and all health care providers, free from stigma and discrimination. We call on the government to fund:

  • the creation, promotion and delivery of up-to-date, medically accredited education for practising GPs and those in training, and;
  • patient support and coordination of allied health services to improve quality of life.

Because people with ME/CFS matter! 

References:

[1] Pheby DFH, Araja D, Berkis U, et al. ‘A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE)’ Medicina, 57:1 (2021) 7.

[2] Pheby, et al. ‘A Literature Review of GP Knowledge’.

[3] Emerge Australia. ‘Health and Wellbeing Survey 2019’, available at https://www.emerge.org.au/health-and-wellbeing-survey-2019.

 

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