FOI 25/26-2645

DOCUMENT 3

Research paper

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For Internal Use Only

Myalgic encephalomyelitis / Chronic fatigue syndrome

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Please note:

This document is intended to assist Technical Advice and Practice Improvement Branch (TAPIB) staff with provision of technical advice or practice improvement activities. Branch Manager clearance is required before research documents are shared outside the branch.

The TAPIB Research team take care to ensure the research presented is accurate at the time of writing. Due to the nature of our work, we are not able to ensure that all relevant research has been considered in the development of this document or that information remains accurate after publishing.

Research question/s: What are the diagnostic features of ME/CFS? What is the prognosis for someone diagnosed with ME/CFS? What factors affect prognosis? What evidence-based treatment or management strategies are most effective for people with ME/CFS? What is the prevalence of communication difficulties for people diagnosed with ME/CFS? What evidence-based treatment or management strategies are most effective for addressing communication difficulties caused by ME/CFS?

Date: 07/05/2026

1. Contents

Myalgic encephalomyelitis / Chronic fatigue syndrome …………………………………………………….. 1

1. Contents ………………………………………………………………………………………………………….. 1
1. Summary …………………………………………………………………………………………………………. 3
1. What is ME/CFS? ……………………………………………………………………………………………… 3
- 3.1 Prevalence ………………………………………………………………………………………………… 4
- 3.2 Symptoms …………………………………………………………………………………………………. 4
1. Diagnosis ………………………………………………………………………………………………………… 6
- 4.1 Diagnostic criteria ……………………………………………………………………………………….. 6
- 4.2 Diagnosis in Australia ………………………………………………………………………………….. 6
1. Management and recovery …………………………………………………………………………………. 7

ME/CFS | Page 1 of 16

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Research paper

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For Internal Use Only

5.1 Pacing ………………………………………………………………………………………………………. 9
5.2 Cognitive Behavioural Therapy …………………………………………………………………….. 9
5.3 Exercise and physical therapy…………………………………………………………………….. 10
5.4 Carers and family ……………………………………………………………………………………… 10
1. Communication difficulties in ME/CFS ……………………………………………………………….. 11
1. References …………………………………………………………………………………………………….. 12

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2. Summary

Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) is a chronic condition characterised by excessive fatigue, especially after activity, along with a wide variety of multi-system symptoms. ME/CFS can be debilitating and result in significant functional impairment.

There are important sites of disagreement in research related to ME/CFS preventing strong recommendations about diagnosis or management. The causes and mechanisms are still unclear. There are multiple definitions of ME/CFS with overlapping but distinct diagnostic criteria. Estimates of those that recover or improve after an ME/CFS diagnosis vary widely from 4% to 83%.

There is no gold standard management strategy. There are some proposed pharmacological and non-pharmacological treatments, though their efficacy is still debated. Cognitive behavioural therapy, exercise therapy and energy conservation techniques are widely recommended though evidence in support of these strategies is often of low or very low quality.

Communication difficulties are a recognised symptom of ME/CFS. Word finding problems are the most reported speech difficulty. No studies or recommendations were found that directly address problems with language or communication in ME/CFS.

Australia’s National Health and Medical Research Council (NHMRC) is currently developing a clinical guideline for the diagnosis and management of ME/CFS. A draft guideline is expected to be available for public consultation in mid- to late-2027.

3. What is ME/CFS?

Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) is a chronic neurological condition characterised by excessive fatigue, especially after activity, as well as impairments in other bodily systems including sleep, circulation, respiration, digestion, mood, cognition, thermoregulation, and sensory processing (WHO, 2026; AIHW, 2025; Steiner et al, 2023; Grach et al, 2023; NICE, 2021a-b; Deumer et al, 2021).

The exact causes and mechanisms that lead to ME/CFS are not known. Current research suggests the probable involvement of viral infection, immune system functions and genetic susceptibility (Ali & Kheirabadi, 2025; AIHW, 2025; Health Direct, 2024). ME/CFS is classified as a neurological condition (AIHW, 2025; WHO, 2019; WHO, 2026). It is included in the International Classification of Disease under the heading Postviral fatigue syndrome (WHO, 2026; WHO, 2019) as viral infection is a common precipitating factor in development of symptoms (ME/CFS Australia, 2026; Health Direct, 2024; Emerge, n.d.). On some estimates, between 10% and 50% of people experiencing Post COVID syndrome also meet criteria for ME/CFS (ME/CFS Australia, 2026; Fan et al, 2026; also refer to RES 254 Post COVID syndrome). There are also reports of ME/CFS developing after exposure to certain chemicals,

physical injury or other physical or psychological trauma (ME/CFS Australia, 2026; Health Direct, 2024; Emerge, n.d.).

ME/CFS can affect all age groups. Some sources suggest the condition is most likely to occur in people aged 20 to 40 (AIHW, 2025; Health Direct, 2024), while others state it is more likely in those over 40 years (Fan et al, 2025; Ali & Kheirabadi, 2025). There is a consensus in the literature that women are more likely to develop ME/CFS (ME/CFS Australia, 2026; AIHW, 2025; Fan et al, 2025; Ali & Kheirabadi, 2025; Health Direct, 2024; Emerge, n.d.).

3.1 Prevalence

Prevalence estimates vary as there is no consensus on the definition or set of diagnostic criteria for ME/CFS (ME/CFS Australia, 2026; Emerge, n.d.; NHMRC, n.d.) (see section 4 below for more information on diagnosis). Studies estimate global prevalence rates from less than 0.1% up to 3% (Fan et al, 2025; Ali & Kheirabadi, 2025). The Australian Institute of Health and Welfare (AIHW, 2025) estimates around 219,000 Australians are living with ME/CFS, which equates to a prevalence rate of 950 per 100,000 people (0.95%). The National Health and Medical Research Council (NHMRC, n.d.) estimates prevalence of between 0.2% and 1%, which suggests between 48,000 and 250,000 people in Australia have this condition.

In 2025, Australian ME/CFS groups including ME/CFS Australia, Emerge, ME Group Australia, Bridges and Pathways, and the ME Advocacy Network all endorsed a statement in which they estimate there could be as many as 500,000 people with ME/CFS in Australia (ME Group Australia, 2025). This implies AIHW and NHMRC underestimate prevalence rates. Prevalence rates used by AIHW and NHMRC were based on publications from 2020-2022 and may not account fully for the effects of the COVID 19 pandemic and the co-occurrence of ME/CFS and post-COVID syndrome (ME/CFS Australia, 2026; AIHW, 2025; Komaroff & Dantzer, 2025; ME Group Australia, 2025).

3.2 Symptoms

ME/CFS may include chronic, severe and unexplained fatigue, along with other symptoms affecting bodily functions including sleep, circulation, respiration, digestion, mood, cognition, thermoregulation, and sensory processing (ME/CFS Australia, 2026; AIHW, 2025; Health Direct, 2024; Emerge, n.d.; NICE, 2021a-b).

According to the UK’s National Institute for Health and Care Excellence (NICE), core symptoms of ME/CFS include:

Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-exertional malaise after activity in which the worsening of symptoms:
- is often delayed in onset by hours or days
- is disproportionate to the activity

has a prolonged recovery time that may last hours, days, weeks or longer.
Unrefreshing sleep or sleep disturbance (or both), which may include:
- feeling exhausted, feeling flu-like and stiff on waking
- broken or shallow sleep, altered sleep pattern or hypersomnia.
Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking (2021a, p.12).

Other reported symptoms include:

headaches
muscle or joint pain
a sore throat, swollen or tender lymph nodes
dizziness, breathlessness, rapid heartbeat or nausea
sensitivities to light, noise, temperature and other stimuli (ME/CFS Australia, 2026a; Health Direct, 2024; Emerge, n.d. a).

The functional impact of symptoms can vary. To meet diagnostic criteria for ME/CFS, most diagnostic systems require a substantial reduction in functional capacity. Symptom severity is generally divided into four levels:

mild – significant reduction in activity level, especially in mobility and social activities; usually still able to attend work, school and perform daily activities to a reduced degree
moderate – approximately 50% reduction in pre-illness activity level; most will have stopped work or educational activities and will need frequent rest during the day; sleep is usually of poor quality
severe – will rarely leave the house and will require support for most activities; may manage some light activities independently, such as washing face or brushing teeth; may require mobility aids such as a wheelchair; often extremely sensitive to light and sound
very severe – will rarely leave the house and may remain in bed all day; likely to require assistance with all daily activities, including hygiene and eating; some may experience swallowing difficulties and require tube feeding (Ali & Kheirabadi, 2025;

Arron et al, 2024; Graves et al, 2024; NICE, 2021a; Emerge, n.d. a; ME Group Australia, n.d.).

These levels are only a rough guide. Some symptoms of ME/CFS may be experienced more severely than others and some may fluctuate or progress over time (NICE, 2021a).

4. Diagnosis

Diagnosis of ME/CFS is made by detailed clinical examination against a set of diagnostic criteria. Clinical examination can include detailed medical history, physical examination, and testing (ME/CFS Australia, 2025; Ali & Kheirabadi, 2025; Bateman et al, 2021; Emerge, n.d. b). While there is no single validated test for ME/CFS, there are tools and screeners that can identify the presence or severity of certain core symptoms of ME/CFS, such as post exertional malaise (Graves et al, 2024; Health Direct, 2024). Testing can also be completed to rule out other conditions. This can include blood tests or other physical tests for possible conditions such as vitamin deficiency, thyroid issues or coeliac disease (Ali & Kheirabadi, 2025; Bateman et al, 2021; Emerge, n.d. b).

Australia’s NHMRC is currently developing a clinical guideline for the diagnosis and management of ME/CFS. A draft guideline is expected to be available for public consultation in mid- to late-2027 (NHMRC, n.d. b).

4.1 Diagnostic criteria

There are up to 20 different sets of criteria used to diagnose ME/CFS in clinical or research settings (ME/CFS Australia, 2026; AIHW, 2025; Health Direct, 2024; Steiner et al, 2023; Grach et al, 2023; Emerge, 2022; NICE, 2021a-b; Deumer et al, 2021; Bateman et al, 2021; Noor et al, 2021; Emerge, n.d.).

The World Health Organisation (WHO) states, “Currently there is no consensus agreement amongst medical professionals as to how chronic fatigue syndrome may be definitively diagnosed” (WHO, n.d.). This is because “without a biomarker it is not possible to definitively know if a person has or does not have ME/CFS. Without such a reference standard (or ‘gold standard’) it is not possible to assess the measurement validity of the different criteria” (NICE, 2021b, p.47). Nevertheless, different sets of diagnostic criteria may be justified on pragmatic grounds, including ability to distinguish between cases and controls or the preference for over- or under diagnosis (NICE, 2021b).

4.2 Diagnosis in Australia

There is no set of consensus criteria in use in Australia. A 2019 NHMRC report recommends the use of Canadian Consensus Criteria (CCC) (Jason et al, 2010), International Consensus Criteria (ICC) (Carruthers et al, 2011) or Paediatric Primer criteria in research. The future NHMRC clinical guideline for the diagnosis and management of ME/CFS is expected to include recommendations for consistent diagnostic criteria in Australia (NHMRC, n.d. a-b).

ME Group Australia (n.d.), endorses the International Consensus Criteria (ICC). According to ICC, post-exertional malaise (also termed post-exertional neuronal exhaustion) is required for diagnosis, along with:

at least one symptom in each of three neurological impairment categories
at least one symptom in each of three immune, gastrointestinal or genitourinary impairment categories
at least one symptom from the metabolic impairment category (Carruthers et al, 2011).

Emerge endorses the NHMRC’s recommendations for diagnostic criteria used in research settings, while also suggesting that the CCC and ICC are too complicated for use in clinical settings. For use in clinical settings, Emerge endorses the United States’ National Academy of Medicine (NAM) diagnostic criteria:

Diagnosis requires that the patient have the following three symptoms:

A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest

Post-exertional malaise

Unrefreshing sleep.

At least one of the two following manifestations is also required:

Cognitive impairment

Orthostatic intolerance (Institute of Medicine, 2015, p.6).

5. Management and recovery

Reported recovery rates for people with ME/CFS are likely low. Sources report recovery rates of less than 10% (ME/CFS Australia, 2026; Graves et al, 2024; Ghali et al, 2022; Emerge, n.d. a). Reported improvement rates vary widely from 4% to 83% (Lim & Torpy, 2023; Ghali et al, 2022; Moore et al, 2021). The wide variance in improvement rates may be due to different definitions of improvement and different outcome measures used (Ghal et al, 2022; Moore et al, 2021).

There is no cure for ME/CFS (ME/CFS Australia, 2026b; AIHW, 2025; Health Direct, 2024). Researchers disagree about how effective current management strategies are for ME/CFS (Vink & Vink Niese, 2023; NICE, 2021a). There is still ongoing debate regarding the use of cognitive behavioural therapy and graded exercise programs. Seton et al (2024) identify a

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Kuut et al (2024) performed a meta-analysis incorporating data from 8 randomised controlled trials and including 1298 participants. They found statistically significant effects on fatigue, functional impairment and physical functioning. Effects were smaller for older people and people with more severe functional impairment. The authors found no significant effects on physical functioning for people with low levels of self-efficacy. Of note, none of the studies reviewed had low risk of bias and all 8 studies were conducted by the authors’ own research group.

Bermpohl et al (2024) performed a meta-analysis incorporating data from 15 randomised controlled trials and including 2015 participants. They found small to moderate effects on fatigue, depression and anxiety. Of note, the studies reviewed were rated as either high risk of bias or as having some concerns.

5.3 Exercise and physical therapy

Regarding exercise programs, the NICE guidelines do not recommend graded exercise programs or unstructured exercise programs. Instead, they recommend if the patient understands and requests a personalised exercise program, the program should begin with activities below their baseline level and ensure that they can tolerate that level for a period of time. The authors state:

The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME/CFS. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS (2021a, p.78).

These recommendations were controversial. Some researchers argued that the recommendation against graded exercise therapy does not reflect the definitions of that approach used in the studies that NICE reviewed, and ignores some studies that show benefit of low intensity exercise for some people with ME/CFS (White et al, 2023). Wormgoor and Rodenburg (2021) found some evidence that graded exercise therapy improves fatigue as measured by participant self-report measures. However, objective measures of fitness, level of physical activity and employment showed no benefit.

5.4 Carers and family

People with ME/CFS are likely to experience reduced capacity to participate in family and social activities, contribute to household tasks and also may experience difficulties with relationships, intimacy and finances (Arron et al, 2024). Family and carers can provide support for people with ME/CFS to engage in social and family life in ways they are able to. This can include assisting their family member to explore accessible social or economic activities, navigate health and social services and complete daily activities. This may require family and carers to change their expectations of what their family member with ME/CFS can do (NICE,

2021b). Without adequate support, carers and family of people with ME/CFS, are at increased risk of reduced physical and mental health, social isolation, reduced economic participation and may not be able to provide needed support to their family (AIHW, 2025; Arron et al, 2024; NICE, 2021b).

6. Communication difficulties in ME/CFS

Cognitive difficulties are either common in or essential to ME/CFS, depending on the set of diagnostic criteria. Five of the nine sets of diagnostic criteria reviewed by NICE (2021b) include word finding problems as an example of cognitive symptoms (Grach et al, 2023; Lim & Torpy, 2023; NICE, 2021a-b; Maksoud et al, 2020; Institute of Medicine, 2015). Grach et al (2023) suggest that word finding and language processing problems could be a feature of post-exertional malaise, which is a core symptom of ME/CFS according to several definitions.

However, the extent or severity of linguistic problems in ME/CFS is not clear. One study found around 75% of subjects experienced difficulties with words, though the authors do not elaborate on the type, frequency or severity of the difficulty (Institute of Medicine, 2015).

Evidence presented in a 2022 meta-analysis of cognitive impairments in ME/CFS shows an uneven picture of linguistic ability (Sebaiti et al; 2022). The authors found a moderate to large effect of ME/CFS on language processing speed (as measured by Colour/Word tests) and long-term verbal memory (as measured by California verbal learning test recognition, Weschler logic and reading tests). They found no significant effect on instrumental linguistic skills (as measured by the Boston Naming Test and Weschler Adult Intelligence Test), short term verbal memory (as measured by Digit Span Forward and Backward) or linguistic efficiency (as measured by National Adult Test Reading and Weschler Adult Intelligence Test).

No studies were found that address management of language or communication impairment for people with ME/CFS.

7. References

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