GP education program

There is currently no known cure for post-viral diseases such as ME/CFS and Long COVID, nor are there evidence-based treatments proven to be effective.

The current goal of treatment is to improve a patient's quality of life through strategies which manage symptoms.

Early and accurate diagnosis is an area requiring improvement. General awareness of how to diagnose ME/CFS is limited in Australia, with only a minimal number of GPs experienced in diagnosing and managing post-viral diseases. Due to the chronic and multi-system nature of the illness, support from GPs with experience in managing the disease is often expensive, and, most are located in capital cities.

Pacing and stepwise symptom management can support people living with ME/CFS to manage their symptoms. They will likely similarly benefit Long COVID patients who experience post-exertional malaise. Even if Long COVID patients do not go on to develop ME/CFS, some patients with post-COVID conditions may also benefit from approaches such as pacing¹.

A comprehensive GP Education program has already been developed by Emerge Australia but requires significant, long-term investment to implement.

The patient: Pacing

Pacing is proven to be safe, effective and practical for the majority of people living with ME/CFS². The World Health Organisation has recommended pacing as a strategy for people with Long-COVID who experience PEM³. Patients can implement pacing by: STOP pushing their limits; REST before they feel symptoms and PACE their daily cognitive and physical activities².

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 of pacing is to leave some ‘energy in the battery’ at the end of the activity. An increase in symptoms after adding additional activity may indicate the patient has exceeded their energy limits and they should reduce to the previous activity level.

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 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.

*ME/CFS is classified as a neurological disorder by the World Health Organisation.

It is a complex disease that affects many parts of the body such as the brain, muscles, digestive, immune and cardiac systems.

The US National Academy of Medicine (NAM) estimates 90% of people living with ME/CFS are undiagnosed³. The NAM developed diagnostic criteria in 2015 to make it easier for doctors to diagnose ME/CFS. Emerge Australia advocates for use of the US National Academy of Medicine (NAM) criteria to diagnose ME/CFS.

Symptoms required for a diagnosis of ME/CFS using the NAM criteria⁴

substantial reduction in the ability to engage in pre-illness activity. This must have persisted for six months or more, and be accompanied by profound fatigue that isn’t substantially improved with rest
post-exertional malaise (PEM), which is the worsening of symptoms following physical or mental exertion
unrefreshing sleep

Plus, either:

problems with memory, thinking or concentration
difficulty being upright (dizziness, sweating, nausea or other symptoms when standing that are reduced when lying down)

The symptoms included in the NAM criteria are not the only symptoms that people with ME/CFS experience, nor are they the only common symptoms. They are the minimum symptoms required to meet the diagnosis of ME/CFS using the NAM criteria.

While research is yet to confirm the cause of ME/CFS, viral infections such as coronaviruses, Epstein Barr virus and Ross River virus are the most common triggers. Approximately 75% of people with ME/CFS can attribute onset of symptoms after viral infection⁵. Other triggers of ME/CFS include physical trauma, genetics, environmental toxins and physical, mental or emotional stress.

There has been widespread acknowledgement that more research is urgently needed to fill gaps in our biomedical understanding of the condition, its aetiology, pathophysiology, diagnosis and treatment^6,7,8. A medical profession that has historically been poorly equipped to support ME/CFS patients is now unprepared to handle the vast number of cases of Long COVID^9,10.

Relationship with Long COVID & persistent post-viral syndromes

Post-infectious illness consistent with the symptoms of ME/CFS has been described in the scientific literature for over 200 years¹¹. Post-infectious illness can be triggered by many different pathogens, such as Epstein Barr virus^12,13, Ross River virus¹⁴, Human Herpes Virus 6 (HHV6)¹⁵ and even Ebola virus¹⁶. The acute symptoms of these illnesses, and the organ damage they cause, can be very different. However, the lingering chronic fatiguing illness following each illness appears to be quite similar¹⁷. Post-acute sequelae of SARS-CoV-2 infection, referred to as Long COVID^[18] in this document, is most likely just the latest post-viral condition to add to this long list¹⁹.

It is estimated that 10-30% of people who get sick with COVID-19 will experience Long COVID, though this rate may be higher in those who were hospitalised. Diagnostic criteria require 6 months of symptoms to be present before ME/CFS can be diagnosed and Long COVID has already led to ME/CFS for some, or in the case of some studies, all patients.

This is our time to remind all sitting members that people with ME/CFS matter. The voices of all 250,000 Australians living with ME/CFS must to be heard. Our votes count.

The release of the State of the Nation report is our vehicle to action.

Read the report here - State of the Nation: Because people with ME/CFS matter

Email your local Member of Parliament or Senator now, using our simple and easy-to-use online platform. In under 2 minutes you can send an email to your representative calling for change. It's as simple as entering your residential address, reviewing the content of the letter and pressing "send my email". Easy!

Take action now and contact your local MP or Senator

References

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management, Mayo Clinic Proceedings, Volume 96, Issue 11, November 2021, Pages 2861-2878
Decary et al., “Humility and Acceptance: Working Within Our Limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, Journal of Orthopaedic & Sports Physical Therapy, vol. 51, iss 5, 2021  
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Washington (DC): National Academies Press (US); 2015.
National Academy of Medicine, “Proposed Diagnostic Criteria for ME/CFS”, 2015 https://www.nap.edu/resource/19012/MECFS_ProposedDiagnosticCriteria.jpg
H. Naess, E. Sundal, K.-M. Myhr, H.I. Nyland, Postinfectious and chronic fatigue syndromes: clinical experience from a tertiary-referral centre in Norway, Vivo, 24 (2) (2010), pp. 185-188
NAM report p 225
Fluge, Tronstad and Mella, “Pathomechanisms and possible interventions in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)”, The Journal of Clinical Investigation, vol 131, no. 14, 2021.
NHMRC report, pp 16-17.
Pheby, D., Friedman, K. J., Murovska, M., & Zalewski, P. (2021). Turning a Corner in ME/CFS Research. Medicina (Kaunas, Lithuania), 57(10), 1012. https://doi.org/10.3390/medicina57101012
Michael J. McCarthy, Circadian rhythm disruption in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Implications for the post-acute sequelae of COVID-19, Brain, Behavior, & Immunity - Health, Volume 20, 2022, https://doi.org/10.1016/j.bbih.2022.100412.
Komaroff, A. L., & Lipkin, W. I. (2021). Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends in molecular medicine, 27(9), 895–906. https://doi.org/10.1016/j.molmed.2021.06.002
Jones JF, Ray CG, Minnich LL, Hicks MJ, Kibler R, Lucas DO. Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies. Ann Intern Med. (1985) 102:1–7. doi: 10.7326/0003-4819-102-1.
White PD, Thomas JM, Amess J, Crawford DH, Grover SA, Kangro HO, et al. Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever. Br J Psychiatry. (1998) 173:475–81. doi: 10.1192/bjp.173.6.475
Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. (2006) 333:575–8. doi: 10.1136/bmj.38933.585764.AE
Komaroff AL. Is human herpesvirus-6 a trigger for chronic fatigue syndrome? J Clin Virol. (2006) 37:S39–46. doi: 10.1016/S1386-6532(06)70010-5
Epstein L, Wong KK, Kallen AJ, Uyeki TM. Post-Ebola signs and symptoms in U.S. survivors. N Engl J Med. (2015) 373:2483–4. doi: 10.1056/NEJMc1506576
Komaroff Anthony L., Bateman Lucinda, Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?, Frontiers in Medicine, 7, 2021, https://www.frontiersin.org/article/10.3389/fmed.2020.606824.
Nabavi, N. Long covid: How to define it and how to manage it. BMJ (Clinical research ed.) 370, (2020).
Komaroff, A. L., & Lipkin, W. I. (2021). Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. Trends in molecular medicine, 27(9), 895–906. https://doi.org/10.1016/j.molmed.2021.06.002

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