We respectfully request clinicians and the community to support our call to establish the Statewide Clinical Network for ME in Queensland, Australia.
Statewide Clinical Network for ME
The objectives of the Statewide Clinical Network for ME will be;
- Enhance the understanding of ME and promote clarity and consistency for optimal clinical identification and treatment
- Consider endorsing Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (ICP) as a clinical guideline for ME in Queensland.
Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (ICP)
ICP is a clinical guideline of Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC), the diagnostic criteria for ME that we advocate.
A panel of ME experts developed it by reaching 100 % consensus through a Delphi-type process, then published it in 2012. It is also a recognised clinical guideline for ME by National Health and Medical Research Council (NHMRC).
Prevalence of ME
According to the ICP (p1), the prevalence of ME is between 0.4 and 1%. This means there are between 20,752 and 51,880 Queenslanders living with ME.
Here are some comparisons to help you visualise how poorly the healthcare system treats ME.
Some people say Multiple Sclerosis (MS) is a cousin of ME. According to MS Queensland, an estimated 3,700 Queenslanders lives with MS.
Parkinson’s Disease is another neurological disease. Perkinson’s Queensland estimates over 18,500 Queenslanders living with Parkinson’s.
Despite higher prevalence than MS or Perkinson’s Disease, ME doesn’t have a designated specialist to diagnose and care. People with ME (pwME) are currently not receiving systemic healthcare for this debilitating and disabling condition. It is as if this group of patients do not exist.
Need to Access Healthcare from Home
25% of patients with ME are Severe (mostly housebound) and Very Severe (mostly bedridden and needs help with basic functions). The research of Frail, homebound and bedridden Australians living without primary health care highlighted the challenges of accessing primary healthcare by this group of people.
The request for the Statewide Clinical Network for ME to discuss adopting ICP is also registered. However, the HIU will not consider establishing the network until they hear a strong voice from clinicians.
We would be grateful if clinicians contact Clinical Excellence Queensland and add their voices to support our initiative to provide systemic clinical care for ME.
We would also like pwME and people who suspect they have ME to encourage their clinicians to support our initiative.
Here is a sample letter to help you add your voice to establish the Statewide Clinical Network for ME.
The ICP could also help long COVID patients because there is the hypothesis that the long COVID is ME.
ME Group Australia is an action-oriented social purpose charity to advance health for ME.