Open Letter: Recognition of medical specialty of Myalgic Encephalomyelitis (ME) in Australia

To Whom It May Concern

RE: Recognition of Medical Specialty of Myalgic Encephalomyelitis (ME) in Australia [1]

I am writing this open letter to start a conversation about applying for recognition of a new medical specialty in ME with the Medical Board of Australia, thus creating an “official” ME Specialist designation in Australia.

From more than 15 years of my lived experience, observation and conversation with compassionate medical practitioners (both GPs and specialists), I believe this is what we need to tackle ME medical inequality in Australia.

However, I am not familiar with the medical and healthcare industry, nor the law and regulations that govern the industry. Therefore, I hope people who work or have worked in the industry could share practical information/knowledge to better understand and improve the feasibility of this idea.

I am not going to mention the importance of quality ME research in this letter. I strongly support the advocacy for more government research funding. I participate in campaigns for research funding as well as participating in ongoing research.

This letter is to talk about medical care for ME, which is as equally important as quality research.

Background

Myalgic Encephalomyelitis (ME) is classified as a neurological disease by the World Health Organisation, the same category as Multiple Sclerosis and Parkinson’s disease. It affects multiple systems such as brain (autonomic function, cognitive function, sensory stimuli process, sleep regulation, body temperature regulation, and etc), energy metabolism, immune system, endocrine system, muscles and digestive systems.

An estimated 250,000 Australians, 51,000 Queenslanders, and 1,000 Forde residents have ME/CFS. 25 per cent are housebound or bedbound. [2] The ME/CFS burden of disease on society is estimated to cost Australia $1.4 billion in direct and indirect health costs each year. [3]

Despite these significant figures, ME still remains an orphan disease, with no specialist provision within the healthcare system.

Australian Medical System

In the Australian medical system, we have General Practitioners (GP) and Specialists as key healthcare players.

The GP is a gatekeeper; they are the first contact point for people seeking medical help.

They handle a wide variety of medical and healthcare needs, such as “niggling” health concerns, emergency, injury, both acute & chronic illnesses, vaccination, public health, men’s health, women’s health, children’s health, elderly’s health, mental health and much more. This is just amazing and overwhelming.

Their assigned role in chronic illness in the Australian medical system is to triage and care taking.

Specialists assess patients, conduct further investigation if necessary, diagnose, and decide on appropriate treatment and management. Then, communicate with the referring GP on patients’ care needs. If necessary, they educate GP on the diagnosis.

At the specialist level, research collaboration can happen. They exercise their discretion on treatment and the patient may be able to try experimental treatment under their supervision.

Specialists have Continuing Professional Development (CPD) obligations to keep up with the up to date knowledge in their speciality field.

With specialists’ instructions, GP are more able to monitor and follow up treatment and management.

ME’s place in Australia’s medical system

It is impossible to appropriately triage a patient when a GP has no knowledge of ME. (Thankfully, the recently introduced online GP education by Emerge Australia, Busting the myths, could change this. [4])

Then, there is no ME specialist to refer the patient to. GPs often do their best and refer patients to the most relevant specialist based on the symptom(s) they present. Because ME presents as multi system symptoms, the patient can end up being referred to multiple specialists.

Currently, established specialists have no knowledge about ME. The best they can do is to send the patient back to the GP, unless the patient is confirmed with their speciality area of disease.

For ME patients, the primary result of specialist appointment(s) is “exclusion”.

Neurologists do not claim ME as within their speciality, despite ME being classified as neurological disease by WHO. No established specialist does. Therefore, none of them have an obligation to keep up with up to date knowledge about ME, which is outside of their speciality.

In Queensland, GPs are instructed to refer CFS patients to Rheumatologists, despite Rheumatologists refusing to see CFS as their speciality. Rheumatologists treat Fibromyalgia and Ehlers-Danlos syndrome, but not CFS nor ME.

Missing a place in the medical system, desperate patients continue to look for medical help. We have no choice, but to learn about our illness ourselves and have to be our own medical expert. Finding the medical care we need in the system is like buying a lottery ticket.

For housebound and/or bedbound patients, seeking medical care is extremely challenging, if not impossible.

In this environment, frustration and despair are frequently expressed by both patients and medical practitioners.

Demand for ME specialists in Australia

Soon after The National Centre for Neuroimmunology and Emerging Diseases (NCNED) started severe ME research, they opened a CFS/ME Specialist Clinic.

Patients wanted to make an appointment from all over Australia. It didn’t take long before appointment waiting time became 6 months. Sadly, they closed the clinic in order to focus on the important research.

I whole heartedly respect their decision to close the clinic. Running a research institution is completely different from running a medical clinic. They are a renowned ME/CFS research centre and one of the leaders in ME/CFS research worldwide. At the same time, I cannot hide my disappointment. It was not only patients, but also medical practitioners who were disappointed by the closure of the Specialist Clinic.

In light of the closure of the clinic there is clear demand for Australian ME Specialists.

Let’s say a specialist has 1 hour consultations and sees 5 patients a day. That would be 1,200 consultations a year. 1 hour/patient x 5 patients a day x 5 days a week x 48 weeks a year.

We have estimated 250,000 ME patients in Australia, so we need at least 208 ME specialists each patient to have 1 X 1 hour consultation a year.

In reality, some patients need frequent appointments, especially those seeking diagnosis and newly diagnosed. Specialists need more than 4 weeks holiday leave a year. They may need sick/personal leave as well as leave for education to meet the Continuing Professional Development obligation.

Proposing 208 specialists is therefore a conservative estimate.

How to create

The Medical Board of Australia would need to consider recognising a new speciality. [5]

This is where we need to have really good strategic plan with money (application fee $10,000 as well as necessary ongoing legal and personnel expenses) and a capable organisation.

We need people and organisations who are familiar with the Health Practitioner Regulation National Law and practical and operational knowledge of medical practice in Australia.

I attach copies of Application Guide and Flowchart by Medical Board of Australia that explains how to prepare for the successful application. I still need to read them thoroughly to understand the process. (I’m struggling with ME brain and very limited functioning hour in a day.)

In order to support the application, we also need to consider the following:

The Capacity to Provide Training and Education to Support Specialist Practitioners

The application requires the capacity to provide training and education to support specialist practitioners.

I propose to approach a medical school to create a few elective subjects for ME specialist designation, such as history of ME, all existing diagnostic criteria, medical hypothesis of ME, research into ME in the past and now, and etc.

ME specialists also need to have knowledge in established specialist fields such as neurology, immunology, endocrinology, gastroenterology, genetics, physiology, and etc etc.

The need for 208 ME specialists in Australia seems a reasonable justification to create a university medical course.

With the combination of existing speciality knowledge and unique ME knowledge, I believe we have enough of a foundation to develop this new speciality in Australia.

Knowledge is evolving. This goes to every other established speciality field. If we wait for “perfect” knowledge of the condition before creating a speciality in ME, that time will never come.

While practising as a ME specialist, he or she has professional obligations to keep up with the latest knowledge on the field.

I don’t know which needs to come first, ME specialist designation at a medical school or recognition of ME speciality. Timing would be tricky as these seem necessary to each other.

I also don’t know which university or medical school would be willing to create ME specialist course.

Establish ME Specialist Clinics

While the application process is in progress, I propose we also work to establish ME Specialist Clinics to fulfil medical care needs from people seeking diagnosis to patients who need continuing medical care at home.

This could demonstrate the case for public interest and demand in medical care needs for ME that is not covered by current medical system and existing specialities.

Pros

Practically

As ME is a complex illness with rapidly evolving knowledge, multiple speciality fields are currently involved in treating patients. By creating a ME specialty, it frees up all other established specialists’ time, resource and burden to keep up with ME knowledge.
By creating an ME speciality, it eliminates duplicated investigations and communication error between medical practitioners.
By creating ME specialists, the burden on the public purse for multiple specialists for each ME patient will be eased.
By having an ME speciality, accurate figure of patients’ numbers and clinical information can be obtained and managed. With the data, government strategies and support can be improved.
By creating ME specialists, generalised stigma towards patients and treating medical practitioners will be eased.

Economically

Create a new career path for medical students and medical practitioners.
Eliminate duplicate diagnostic investigation and consultation cost.
Initial cost of establishing the speciality will be recovered by keeping patients more productive and less social security dependant.

For Patients

Receive adequate medical care.
Receive adequate treatment and management.
Early diagnoses and the right treatment/management can keep patients productive.
Minimise harm.
Medical recognition will lead to better access to legal and social support, such as pension, insurance, disability support and etc.

Cons

The project of recognition of new specialty in ME in Australia or creating an “official” ME Specialist category would compete with the limited resources (money, personnel, opportunities) being directed to quality ME research advocacy.

I acknowledge many ME patients struggle to read. I appreciate it very much for your time and efforts on reading my letter.

Sincerely

Rachel Makepeace

2 December 2019

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Attachments:

Reference:

[1] Medical Board of Australia: Recognition of medical specialties https://www.medicalboard.gov.au/Registration/Recognition-of-medical-specialties.aspx

[2] ME/CFS Advisory Committee Report to NHMRC Chief Executive Officer https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chief-executive-officer

[3] The Economic Impacts of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort https://www.frontiersin.org/articles/10.3389/fpubh.2020.00420/full

[4] ‘Busting the Myths …’ Emerge Australia and Think GP launch new GP Education module on ME/CFS https://www.thinkgp.com.au/education/mecfs

[5] Medical Board of Australia: Recognition of medical specialties https://www.medicalboard.gov.au/Registration/Recognition-of-medical-specialties.aspx

This open letter was first published at ME Australia on 13 May 2020.

The burden of disease figure was updated with NCNED‘s study publication.