Calling on the Statewide Clinical Network for ME

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;

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).

Collectively, the members of the panel have:
• diagnosed and/or treated more than 50 000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.

Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (2012) (p ii)

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 Action

The Health Improvement Unit (HIU) from Clinical Excellence Queensland has registered our request to adopt the ICP as a clinical guideline for ME.

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.

Other Considerations

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.

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