Long before ME Group Australia was incorporated and before I wrote the Open Letter, the dream of Speciality Clinic for Myalgic Encephalomyelitis (ME) was growing quietly.
I called it “Field of Dreams”.
Why did I call it “Field of Dreams”? Here is 9 minutes clip from Universal Picture to refresh your memory.
When we build [the clinic], [patients and doctors] will come. Go distance and ease the pain [of patients and doctors]. I strongly felt this is what people with ME needs.
My “Field of Dreams” now became ME Group Australia (MEGA)’s dream. We humbly hope that our dream becomes yours, too.
Why Speciality Clinic?
The dire needs to help those neglected patients has been continuingly ignored over decades. There is no sign that change is coming.
Between 21 December 2018 and 18 February 2019 there was Public Consultation into Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) that was initiated after Senator Scott Ludlam’s Senator enquiry.
One of the recommendations by the committee in the Report to the NHMRC Chief Executive Officer published on 30 April 2019 was to highlight research opportunities in models of care and service delivery.
This recommendation is still not at planning stage in 2023, and patients are still excluded from accessing speciality healthcare.
People with ME has been waiting for help for more than decades. If the Public Consultation and its recommendations are not acted on, someone has to take a serious initiative to make it happen.
Navigating Complex Case in the Complex Australian Healthcare System.
1. ME does not belong to Australian healthcare system.
Level of healthcare has three (3) tiers, Primary (GP, Allied Healthcare), Secondary (Specialist), and Tertiary (Surgeon, Specialised care in hospital setting). When patient is not well, they see General Practitioner (GP) first. GP would refer the patient to Medical Specialist for further investigation and diagnosis. Patient may be referred to Surgeon or Expertise Consultant for further investigation and treatment. Then, patient comes back GP for ongoing care.
ME is not receiving adequate care at all three tiers.
2. There is no Medical Speciality for ME.
Despite debilitating and disabling disease, ME does not have Medical Speciality. About 25% of patients become homebound and bedridden, also known as Frail, Homebound and Bedridden People (FHBP) that prevent them from accessing the basic healthcare.
Sadly at the Primary Care, ME knowledgeable GP and clinicians are rare. With limited consultation time available for each patient by a GP, complex and chronic disease like ME has no chance for patient centered care.
Patients are constantly searching for a knowledgeable doctor to access care and support. Current situation creates “medical lottery for patients with ME” where only lucky patients are receiving the continuity of care by knowledgeable healthcare providers.
In the Open Letter, I have translated the prevalence as full-time 208 ME specialists. Currently in Australia, we estimated about 5 ME knowledgeable specialists who are juggling to care for patients with ME and their mainstream patients for their relevant medical speciality.
3. Medical Speciality and Speciality Clinic is not only about caring patients.
It also provides and contributes to improve quality of care and healthcare policy.
Value Based Care / Patient Centred Care
- Systemic Continuing Professional Development (CPD) will assure patients to receive evidence-based care.
- Prompt Knowledge Translation. Evidence will be implemented for patient care without unnecessary delay.
- Signals seriousness of the disease to community. Opportunity to end misinformation and disinformation of the disease.
- Co-Design.
Sustainability
- Create career pathway for healthcare providers.
- Create the similar patient care pathways happening in private and public hospitals and specialist clinics.
- Create and enforce the similar mandatory and ongoing education for quality improvement.
Healthcare System
- Collect clinical data that can contribute to research, treatment trials, and healthcare policy.
- Fill the missing healthcare service.
- Ends the vicious cycle of no clinical data, no healthcare policy.
- Opportunity to reduce burden of disease.
- Opportunity to minimise waste from unnecessary or repeating investigations and ‘treatments’.
Support for Medical Practitioners
- No more unrealistic and heavy reliance on a handful of ‘hero’ doctors for entire ME patient population. No more sudden care cessation due to the ‘hero’ doctor retirement or close of practice.
- Minimise unbillable hours from correspondence and research to care a patient.
- Streamlined patient referral and care pathways.
4. Number of neglected patients are not negligible.
According to ME International Consensus Primer for Medical Practitioners (ICP), prevalence of ME is ~ 0.4 – 1%. (page 1) or estimated ~ 106,100 – 265,400 Australians.
Comparing the ME prevalence with other neurological diseases, Multiple Sclerosis (MS) is 0.1% and Parkinson’s Disease (PD) is 0.85%.
As you can see, 1% prevalence is way too high for a debilitating disease without speciality healthcare.
5. Long Covid is a mass disability event. It’s also multiplying ME prevalence.
Dr Anthony Komaroff, Dr Lucinda Bateman, and ME/CFS community have predicted that COVID-19 would lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the beginning of Covid-19 pandemic.
While there is various version of Long Covid prevalence, about 50% fits ME and ME/CFS diagnostic criteria.
It is fair to say that the pandemic has more than doubled ME population, the neglected patients without Speciality Healthcare. Naturally, Long Covid is said to be the mass disability event.
Vision of Sustainable Speciality Clinic Model (Work in Progress)
Considering the above points, what ME Group Australia (MEGA) Clinic should look like?
It needs to exist in the sustainable and quality assuring system.
ME Group Australia (MEGA) Clinic Model. (Work in Progress)
Stakeholders
| Customers | Beneficiaries |
|---|---|
| Patients with ME, ME/CFS, Long Covid, and related complex diseases. | Government |
| Doctors and Clinicians who care for patients with ME, ME/CFS, Long Covid, and related complex diseases. | Patient Community |
| Medical Practitioners and Clinicians. | |
| Researchers |
Pilot Clinic
We envisage to start with Multidisciplinary Team (MDT) Telehealth to test and improve the effectiveness of Value Added Care Model.
We are quietly networking with Doctors, Clinicians, University Lecturers, Researchers, Health Consumer groups, Healthcare Services who are supportive of our vision.
We need your support to finance this dream and implement it for many neglected patients and even more patients in the next generation, and the generation after that.
If you are inspired to be part of the ambitious project, please reach out to us.
Let’s make the lasting change together!