ME/CFS & ALPIMS
ME/CFS: looking at the wider picture
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling illness affecting multiple body systems. It involves a substantial reduction in capacity, post-exertional malaise, unrefreshing sleep, and cognitive difficulties and/or orthostatic intolerance. [1]
How common? A 2020 meta-analysis estimated 0.89% using the older CDC-1994 criteria. Estimates vary with definition and study method; this is not a current post-pandemic estimate. [2]
ALPIMS can help organise symptoms, overlapping conditions and practical support needs. It is a framework, not a diagnosis.
Understand post-exertional malaise first
Post-exertional malaise (PEM) is symptom worsening after exertion that was previously manageable. It often appears 12–48 hours later and may last days or weeks. [3]
Physical, cognitive, emotional and social demands all use energy. Pacing means adjusting demands to available energy, with rest and flexibility. Feeling able to do something today does not guarantee it will be tolerated afterwards. [3] [4]
Do not use fixed increases in exercise or activity. NICE advises against graded exercise therapy using predetermined increments. Changes should be individual, flexible and within energy limits. [4]
Explore the six ALPIMS domains
Open a coloured panel for the connection, evidence and resources.
Anxiety & Autonomic
Orthostatic intolerance means feeling worse while standing or sitting upright. It can involve dizziness, palpitations and faintness. POTS is one associated condition; not all orthostatic intolerance is POTS. [1]
Evidence & prevalence: A small study found POTS in 27% of 59 people with CFS/ME, using older criteria. This is a study finding, not a dependable percentage for everyone with ME/CFS. [5]
What may help?
Ask for assessment of symptoms when upright. Reduce prolonged standing and discuss practical adaptations. Palpitations and dizziness should not automatically be attributed to anxiety.
Laxity & Connective Tissue
Joint hypermobility, HSD and hEDS may coexist with ME/CFS. Joint problems and autonomic symptoms can add to support needs. Hypermobility alone does not establish ME/CFS.
Evidence & prevalence: Studies have explored a hypermobile subgroup, but prevalence and clinical significance remain incompletely characterised. There is no dependable population-wide percentage to use here. [6]
What may help?
Discuss joint instability or recurrent injuries with your clinician. Any physical support or rehabilitation should accommodate PEM and your individual joint needs.
Pain & Bodily Sensitivity
Muscle pain, joint pain and headaches can occur in ME/CFS. Migraine and fibromyalgia may coexist and need their own assessment. [1]
Evidence & prevalence: A small 2011 study reported migraine in 84% of one cohort of 67 people with CFS. This unusually high figure is not the prevalence in all people with ME/CFS. [7]
What may help?
Seek a pain or headache plan that accounts for your other symptoms and medication tolerances. Comfort measures should not create extra exertion.
Immune & Inflammatory
ME/CFS often starts after an infection. Research has found immune differences in some groups, alongside neurological and metabolic changes. Mechanisms are still being investigated. [8]
Evidence & prevalence: A detailed NIH study of post-infectious ME/CFS found biological differences, but was small and exploratory. It does not provide a diagnostic immune test or establish a single cause. [8]
What may help?
Discuss new or persistent symptoms with your clinician. Allergy or suspected MCAS requires separate assessment; a symptom checklist cannot establish these diagnoses.
Mood & Mental Health
Anxiety and depression may coexist with ME/CFS. Loss of capacity, isolation and uncertainty can create emotional strain. ME/CFS is not explained by a lack of motivation.
Evidence & prevalence: CDC notes that as many as half of patients develop depression at some point during illness. This does not mean half are currently depressed or that depression causes ME/CFS. [3]
What may help?
Offer emotional support that respects physical limitations. Therapy may support coping if wanted; it should not be presented as a cure. Treating anxiety or depression does not cure ME/CFS. [3] [4]
Sensory & Neurodevelopmental
Brain fog and sensitivity to light, sound or touch can be part of ME/CFS. Reading, conversation and busy environments may place demands on limited capacity. [1] [4]
Evidence & prevalence: Cognitive difficulties are a recognised feature. Reliable population-wide overlap estimates with autism, ADHD, misophonia or hyperacusis are not established. Brain fog alone does not indicate ADHD or autism.
What may help?
Try shorter conversations, written reminders, fewer simultaneous demands and a quieter environment. Include thinking and communication in pacing decisions.
Start with one support that reduces demand
The first goal may be stability and avoiding PEM. Participation can improve through help or adaptations, rather than greater exertion.
- Rest: plan pauses before symptoms escalate.
- Reduce load: simplify tasks, sensory input and decisions.
- Pace: adjust activity to current capacity, including thinking and communication.
- Support: share essential tasks and request suitable accommodations.
Expansion is optional. It is not a required next stage. Any activity increase should depend on sustained tolerance and individual advice, without fixed targets. [4]
Rest Reduce Load Pacing & Capacity Family & SupportResources & references
Practical resources — external links open in a new tab.
- Emerge Australia: ME/CFS information and support ↗
- Healthdirect Australia: ME/CFS overview ↗
- CDC: managing ME/CFS ↗
- NICE NG206: diagnosis and management ↗
- CDC: ME/CFS symptoms ↗
- Lim et al. (2020): ME/CFS prevalence meta-analysis ↗
- CDC: preventing symptom worsening ↗
- NICE NG206: diagnosis and management ↗
- Hoad et al. (2008): POTS in CFS ↗
- ME/CFS and joint hypermobility subgroup study (2024) ↗
- Ravindran et al. (2011): migraine headaches in CFS ↗
- Walitt et al. (2024): post-infectious ME/CFS biology ↗
General information only. ALPIMS is not a diagnostic tool. These figures describe different populations and cannot be added together. Discuss diagnosis, new symptoms and treatment with your clinician. Supports can improve comfort and access without being a cure.