Addendum - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

1.1Throughout the inquiry the Committee received evidence regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a poorly understood illness.

1.2Although this inquiry was focused on long COVID, given the volume of evidence regarding ME/CFS received, the Committee considers it is useful to acknowledge and discuss this topic.

1.3In general, the evidence about ME/CFS fell into two categories, which are discussed in this addendum:

• A possible overlap between long COVID and ME/CFS, in terms of their definitions and/or symptoms[1]
• Individuals’ experiences with ME/CFS, which some submitters and witnesses argued were relevant to inform a response to long COVID given apparent similarities between the conditions.

Possible overlap between long COVID and ME/CFS

1.4The Committee heard about a possible overlap in the definitions and symptoms of long COVID and ME/CFS.

1.5The National Centre for Neuroimmunology and Emerging Diseases, Menzies Health Institute Queensland, Griffith University observed that ‘current working definitions [of long COVID] are not yet specific and overlap significantly with other post-infectious fatigue syndromes.’[2]

1.6This point was echoed by Ms Elisa Holgate, a person with ME/CFS, who submitted ‘[w]ith such a vague definition, Long Covid could be considered a sub-group of ME/CFS, and it is likely that many Long Covid patients will eventually be included in ME/CFS if they do not recover, or suffer relapses.’[3]

1.7The Committee also heard about possible overlap in symptoms reported by people living with ME/CFS and long COVID. For example, Emerge Australia noted post-exertional malaise[4] as a core feature of ME/CFS and highlighted that this is also a symptom frequently reported by people with long COVID.[5] A group of ME/CFS patient advocates also stated that almost half of people diagnosed with long COVID meet the diagnostic criteria for ME/CFS.[6]

1.8Clinical evidence about a possible overlap between ME/CFS and long COVID is not yet clear. At this stage, many people with long COVID show improvement in symptoms and functioning after varying periods of time,[7] but this appears to be less common for people living with ME/CFS. For example, Professor Lena Sanci, Head, Department of General Practice and Primary Care, Melbourne Medical School at the University of Melbourne, told the Committee that she was aware of patients who saw their GP with ongoing symptoms eight weeks after testing positive for COVID-19 and ‘around a quarter’ of those patients recovered before twelve weeks.[8] However, this is only one indication and Professor Sanci noted that many people are struggling to get an appointment with their GP.

1.9Further, Dr Irani Thevarajan, Infectious Diseases Physician, Victorian Infectious Diseases Service, The Peter Doherty Institute for Infection and Immunity, told the Committee that while there are some common themes between ME/CFS and long COVID, including that both are complex conditions that can affect multiple organs, they cannot necessarily put them into the same category.[9]

1.10Professor Steven Faux and Associate Professor Anthony Byrne from the long COVID clinic at St Vincent’s Hospital told the Committee that despite similarities in the symptoms of long COVID and ME/CFS, there are important differences. They stated that ‘long COVID is the condition that occurs following a single, specific, novel corona virus’ (COVID-19) while ‘ME/CFS is a consequence of another virus’ such as the Epstein-Barr virus.[10]

1.11Professor Faux and Associate Professor Byrne also explained that long COVID patients tend to experience persisting respiratory symptoms, which ‘is not the case in ME/CFS.’ They additionally pointed out ‘important immunological differences’ between patients with these conditions:

In unpublished data, we have shown that the Kyneuranine pathway… is increased in Long COVID but not ME/CFS patients. Published data… shows that the [Kyneuranine pathway] is clearly associated with neurocognitive impairement [sic] in Long COVID patients. This impairement [sic] (brain fog) may not be obvious and was diagnosed on specific neuropsychological testing... This persisted for 12 months in our study and DID NOT IMPROVE over that time.[11]

1.12The Australian Institute of Health and Welfare’s (AIHW) literature review on long COVID covered this topic. Noting potential links made between long COVID and ME/CFS in terms of similarities in symptoms and a possible association with viral infections, the AIHW stated that:

…further research is needed to investigate the relationships between the 2 conditions and care should be taken not to conflate the 2 conditions until more is understood.[12]

1.13The AIHW also noted:

…ongoing symptoms post infection is not limited to long COVID and ME/CFS. Various other infections have been known to cause chronic symptoms collectively referred to as post-acute infection syndromes.[13]

1.14The Committee notes the clinical parallels between ME/CFS and long COVID. However, in the absence of strong evidence establishing that these are the same condition, the Committee agrees with the AIHW that these conditions should not be conflated.

Experience of people with ME/CFS

1.15The Committee heard from many people with ME/CFS, who described their experiences seeking medical treatment and specialised care as individuals with a poorly understood condition.

1.16Emerge Australia submitted that Australia was:

…unprepared for Long COVID, because the medical profession has long neglected and ignored patients with post-infection disease. The scale of the COVID-19 pandemic, and subsequent numbers of Long COVID patients, has been so large the world has been forced to acknowledge what the ME/CFS community, and clinicians and researchers in the field, have long known: post-infection disease is real and devastating.[14]

1.17ME/CFS Australia, a peak body for patient-led ME/CFS organisations, noted in its submission that:

Evidence continues to indicate that people with ME/CFS are disparaged by many health practitioners, experiencing stigma that impacts the health and well-being of those affected and undermining the prevention, early diagnosis, management and health outcomes of the condition…There is no designated specialty for ME/CFS, so diagnosis and management usually take place in primary care. Doctors, nurses and allied health practitioners in General Practice need to be supported by information, education and tools to deliver both early diagnosis and effective ME/CFS care.[15]

1.18Ms Alice Rumble’s submission shared her experience as a patient seeking help from her GP for post-viral illness. She said that GPs are ill-equipped to manage post-viral illnesses such as ME/CFS or long COVID. Mrs Rumble believes this means:

• Patients are required to keep attending Doctor’s appointments until they strike on someone with personal interest or experience in ME or LC [longCOVID], delaying patients getting treatment and putting a strain on overstretched GP clinics and specialists;
• There is a high risk of patients being dismissed or undermined by Doctor’s [sic] who are out of their depth – posing a risk that patients will stop trying to seek treatment and believe it is ‘their fault’ (I have personal experience of Doctor’s suggesting I would ‘bounce back’ or that I may have a mental illness, without conducting any mental health assessments. I know of many patients who are told they are imagining their symptoms or that they have caused them by their lifestyle factors)
• GPs are vulnerable to suggestions from practitioners running ‘fatigue’ or ‘long COVID clinics’ and may not have any understanding of how dangerous the treatment offerings at these clinics are.[16]
  19. Ruth Newport raised the mental health challenges that come with the experience of living with debilitating chronic symptoms without constructive support from health practitioners. She said in her submission:

Depression and anxiety is not the cause of my illness. If I'm depressed about anything, it is because I’ve spent a substantial part of the year being ignored and or dismissed by doctors who haven’t kept up-to-date with the research on ME/CFS and Long Covid. I have lived with complex chronic illness for all my adult life so dealing with dismissive medical professionals is not a new experience for me. Unfortunately, it also appears to be a common experience for many others I’ve met in the Australia Long Covid Community.[17]

1.20ME/CFS patient advocates argued that there is a need for greater GP education around both ME/CFS and long COVID. They advised that GPs have very little knowledge of ME/CFS and noted that the ME/CFS Advisory Committee’s 2019 report and recommendations to the National Health and Medical Research Council (NHMRC) to improve this have not been actioned, despite an undertaking to do so.[18]

1.21In its report to the NHMRC Chief Executive Officer (CEO), the ME/CFS Advisory Committee recommended that the NHMRC:

• Provide clinicians with ME/CFS health care resources including clinical guidelines based on the latest evidence
• Develop a clinical pathway within clinical guidelines for ME/CFS management and effective patient support
• Collaborate nationally to improve clinician awareness of ME/CFS and to disseminate and implement clinical resources.[19]

The CEO’s response to this report advised that the NHMRC should develop clinical guidelines on ME/CFS, but needed to identify a funding source.[20]

1.22Although this inquiry was focused upon long COVID rather than ME/CFS, the Committee acknowledges the challenges that individuals with ME/CFS in Australia face.

Footnotes

[1]See, for example: Emerge Australia. Submission 67, p. 1; Ms Elisa Holgate, Submission 85, p. 1.

[2]National Centre for Neuroimmunology and Emerging Diseases, MHIQ, Griffith University, Submission 215, p.3.

[3]Ms Elisa Holgate, Submission 85, p. 1.

[4]Post-exertional malaise is a worsening of symptoms such as fatigue, pain and cognitive impairment following physical or mental effort. See, Emerge Australia, Submission 67, p. 5.

[5]Emerge Australia, Submission 67, p. 5.

[6]Group of ME/CFS Patient Advocates, Submission 470, p. 6.

[7]See, for example: Associate Professor Louis Irving, Respiratory Physician, Post-COVID Clinic, Royal Melbourne Hospital, Committee Hansard, Canberra, 12 October 2023, p. 1; Associate Professor Alex Holmes, Fellow, Royal Australian and New Zealand College of Psychiatrists, Royal Melbourne Hospital, and University of Melbourne, Committee Hansard, Canberra, 17February 2023, p. 47.

[8]Professor Lena Sanci, Head, Department of General Practice and Primary Care, Melbourne Medical School, The University of Melbourne, Committee Hansard, Canberra, 17 February 2023, p. 50.

[9]Dr Irani Thevarajan, Infectious Diseases Physician, Victorian Infectious Diseases Service, The Peter Doherty Institute for Infection and Immunity, Committee Hansard, Canberra, 12 October 2022, p. 18.

[10]Professor Steven Faux and Associate Professor Anthony Byrne, Submission 544, pages 1–2.

[11]Professor Steven Faux and Associate Professor Anthony Byrne, Submission 544, p. 2.

[12]Australian Institute of Health and Welfare, Long COVID in Australia – a review of the literature, www.aihw.gov.au/reports/covid-19/long-covid-in-australia-a-review-of-the-literature/summary, p. 34, viewed 6March 2023.

[13]Australian Institute of Health and Welfare, Long COVID in Australia – a review of the literature, www.aihw.gov.au/reports/covid-19/long-covid-in-australia-a-review-of-the-literature/summary, p. 34, viewed 6March 2023, citations omitted.

[14]Emerge Australia, Submission 67, p. 2.

[15]ME/CFS Australia, Submission 541, pages 7–8.

[16]Ms Alice Rumble, Submission 184, p. 1.

[17]Ruth Newport, Submission 231, p. 4.

[18]National Health and Medical Research Council, CEO Response – Open Letter to stakeholders, www.nhmrc.gov.au/file/14680/download?token=gVFrWphN, viewed 30March 2023.

[19]National Health and Medical Research Council, Report to the NHMRC Chief Executive Officer,April 2019, p.25.

[20]National Health and Medical Research Council, CEO Response – Open Letter to stakeholders, www.nhmrc.gov.au/file/14680/download?token=gVFrWphN, viewed 30March 2023.