Educate doctors to diagnose ME/CFS and Long COVID and provide evidence-based support to people with these conditions
Emerge Australia has written a 5 years plan for GP Education about ME/CFS, Long COVID and post-viral diseases, accessible to all of Australia’s GPs.
Research estimates 90% of people with ME/CFS have not been diagnosed and GPs often lack knowledge and confidence in diagnosing the disease This data is consistent with Emerge Australia’s survey of people living with ME/CFS, which 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.
In addition to underdiagnosis, misdiagnosis is also common, and has significant implications for patient care. One study found that more than a third of patients diagnosed by their GP with ME/CFS either didn’t meet the criteria for ME/CFS or had other exclusionary conditions, which meant they couldn’t be diagnosed with ME/CFS.
GPs also need to be educated about safe symptom management approaches that can provide relief from symptoms and improve a patient’s quality of life. There are two recommended approaches: pacing and stepwise symptom management, described below. Some patients with Long COVID may also benefit from approaches such as pacing.
Underdiagnosis, misdiagnosis, disbelief and inappropriate management from GPs prevent patients from receiving correct care for their condition. There is a significant need for greater GP education for those already practicing and for medical trainees in undergraduate programs. This will ensure the next generation of people with diseases like ME/CFS and Long COVID don’t suffer the same stigma or poorly informed healthcare.
The patient: pacing and rest
Pacing is proven to be safe, effective and practical for the majority of people living with ME/CFS. To implement pacing, patients must: STOP pushing their limits; REST before they feel symptoms and PACE their daily mental and physical activities
Pacing involves undertaking less activity than what the patient has energy for on a given day, and breaking activities down into short bursts, with added rest breaks. The aim is to help manage limited energy and reduce how often the person experiences post-exertional malaise.
Pacing activity in ME/CFS is “symptom contingent”, which means the person with ME/CFS will have to adjust how much or little they do based on how they respond to activity. The amount a person can do may change from day to day. This is in contrast to some forms of pacing that are ‘quota contingent’, meaning that the patient does a set amount of activity each day regardless of their symptoms.
The healthcare practitioner: stepwise symptom management
While pacing and rest are self-management approaches, doctors and healthcare practitioners can help with stepwise symptom management. This involves ranking symptoms from most to least problematic and exploring options to help reduce symptoms, starting with the most problematic. This approach to management isn’t treating the underlying cause of ME/CFS or Long COVID, but it can help to improve overall quality of life.
As evident from these brief explanations, pacing and rest and stepwise symptom management are basic but practical steps that can be taken to attempt to gain some control over symptoms. They do, however, have limited application and limited results for many, particularly those who are very unwell.
Emerge Australia’s GP Education program includes employing dedicated, ME/CFS GP educators to deliver national roll-out of:
- updated ME/CFS HealthPathway across all Primary Health Networks
- a comprehensive, CPD accredited training package for GPs using face to face training, webinars and presentations. This training will educate GPs about how to use the HealthPathway and include specific training about pacing.
- tertiary training modules for medical students
- marketing and promotional activities.
 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.
 Emerge Australia. ‘Health and Wellbeing Survey 2019’. Available at https://www.emerge.org.au/health-and-wellbeing-survey-2019 (accessed 20 January 2022).
 Johnston, Staines & Marshall-Gradisnik, ‘Epidemiological characteristics of chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients’ Clin Epidemiol, 8 (2016).
 Décary, S, Gaboury, I, Poirier, S, et al. ‘Humility and Acceptance: Working Within Our Limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ Journal of Orthopaedic & Sports Physical Therapy 51:5 (2021) 197–200.
 Decary, et al. ‘Humility and Acceptance’.
 Decary, et al. ‘Humility and Acceptance’.