ALPIMS · ME/CFS
A different kind of energy.
Understand ME/CFS, recognise post-exertional malaise and find practical ways to protect the energy and capacity you have.
Explore practical tools ↓
This page offers general information and practical options. It does not diagnose ME/CFS or replace individual medical care.
What is ME/CFS? A complex, long-term illness affecting multiple systems.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex illness that can substantially reduce a person’s ability to function.
It is more than ordinary tiredness. People may experience profound fatigue, post-exertional malaise, unrefreshing sleep, problems with thinking or concentration, pain, dizziness and other symptoms.
Symptoms and capacity can fluctuate. A person may be able to do something on one day and be unable to repeat it safely on another.
ME/CFS can be mild, moderate, severe or very severe. Someone who looks well may still have substantial limitations.
There is no single diagnostic test. Assessment involves the person’s symptoms, history and examination, while considering other possible explanations.
What is post-exertional malaise? PEM can be delayed and disproportionate to the activity.
Post-exertional malaise (PEM) is a worsening of symptoms after activity that previously might have been tolerated.
The activity may be physical, cognitive, emotional or social. For some people, sensory stimulation or upright activity can also contribute.
PEM is often delayed. A person may feel relatively okay during an activity and become substantially worse later that day or over the following days.
A crash may include increased fatigue, pain, dizziness, cognitive problems, sleep disturbance, headache, flu-like symptoms or increased sensitivity to light and sound.
Recovery can take days, weeks or longer.
A useful question is not simply “What did I do today?” but also “What happened afterwards?”
The terms PEM and post-exertional symptom exacerbation (PESE) are both used. PEM is retained here because it is widely recognised.
Tools that may help
Tap a coloured button ↗. These are options to adapt, not targets to complete. Your safe level may change.
PEM & pacing Stay within what your body can tolerate.
Pacing means balancing activity and rest around your individual limits. It includes more than physical activity: thinking, conversations, emotions, sensory input and time upright can all use energy.
Notice whether an activity produces delayed worsening. If it does, consider reducing the duration, intensity, frequency or demands, or changing how the activity is done.
Quick tool: “What did I do? / What happened later? / What could I change?”
Make it fit: Energy limits can fluctuate. A good plan leaves room for bad days rather than assuming tomorrow will be the same as today.
Pacing & PEM check-in — Coming soon My energy envelope — Coming soonActivity & daily living Make necessary tasks cost less.
Break tasks into smaller parts where useful. Sit rather than stand, keep frequently used items nearby, use equipment or ask for help when that reduces energy cost.
A shower, meal, phone call, appointment or shopping trip can all contribute to the day’s total load.
Quick tool: “Must do ___ / can wait ___ / someone else could do ___.”
Make it fit: A smaller amount of activity is not failure. Conserving energy for personal care, relationships or something meaningful can be a rational choice.
Daily Living — Coming soon Make one task easier — Coming soonBrain fog & cognitive energy Reduce the amount your brain has to hold at once.
Cognitive exertion can contribute to PEM. Reading, planning, concentrating, making decisions, conversations and screen use may all consume energy.
Try written prompts, reminders, one question at a time, simplified instructions, fewer decisions and scheduled pauses.
Quick tool: “One thing now / write down the rest / return later.”
Make it fit: Allow extra processing time. Needing information in writing is a reasonable adaptation, not a lack of effort.
Cognitive energy check-in — Coming soon Communication preferences card — Coming soonOrthostatic symptoms When being upright makes symptoms worse.
Some people with ME/CFS experience dizziness, light-headedness, nausea, weakness, palpitations or worsening symptoms when standing or sitting upright.
Notice whether symptoms change with posture, heat, showering, prolonged standing or walking.
Quick tool: “Upright ___ / symptoms start ___ / recovery position ___.”
Make it fit: Discuss persistent or significant orthostatic symptoms with a clinician. Do not assume every episode of dizziness is caused by ME/CFS.
Orthostatic symptoms check-in — Coming soon Body check-in — Coming soonSensory load Light, sound, touch and environments can cost energy.
Some people with ME/CFS become more sensitive to light, sound, movement, touch, smells or busy environments, particularly during a flare or crash.
Reduce unnecessary stimulation where possible. Sunglasses, ear protection, softer lighting, quieter rooms or reduced screen brightness may help some people.
Quick tool: “Less ___ / quieter ___ / lower light ___ / break from ___.”
Make it fit: Sensory strategies should be comfortable and safe. Avoid adding equipment or exercises simply because they are available.
Sensory check-in — Coming soon Sensory support — Coming soonSleep & recovery Rest is not simply a reward for activity.
Many people with ME/CFS have unrefreshing sleep or other sleep problems. Sleeping for longer does not necessarily restore capacity.
Consider what makes rest easier: a predictable environment, reduced stimulation, comfortable positioning and enough time between demands.
Quick tool: “What helps me rest? / what interrupts rest? / what can be removed?”
Make it fit: Persistent sleep problems deserve appropriate assessment rather than assuming they are simply part of ME/CFS.
Recovery plan — Coming soon Sleep check-in — Coming soonCrashes, flare-ups & relapse Respond to worsening before adding demands.
A crash can involve a temporary but substantial worsening of symptoms and function. It may follow activity immediately or after a delay.
During worsening, reducing demands may be more useful than trying to maintain a normal routine.
Think about the whole load: physical activity, thinking, conversations, emotional stress, sensory stimulation, appointments and time upright.
Quick tool: “What can stop? / what must continue? / what help can I accept?”
If your baseline function has changed substantially or remains worse, discuss this with your healthcare professional.
Pain, headache & other symptoms ME/CFS symptoms deserve individual attention.
People with ME/CFS can experience muscle or joint pain, headaches, sore throat, tender glands, nausea, gastrointestinal symptoms, temperature sensitivity and other symptoms.
Not every symptom should automatically be attributed to ME/CFS. New, severe or changing symptoms may have another cause and deserve appropriate assessment.
Quick tool: “New / changing / severe / usual for me.”
Keep a list of important symptoms, medicines and changes in function to discuss with your clinician.
Work, study & participation Access can require changing the demands, not the person.
ME/CFS can affect employment, education, parenting, travel, relationships and everyday responsibilities.
Possible adjustments include shorter periods of work or study, flexible scheduling, remote participation, rest breaks, reduced sensory load, written information and help with physically demanding tasks.
Quick tool: “What matters? / what costs the most? / what adjustment would help?”
Make it fit: Capacity is not necessarily consistent from day to day. A useful adjustment allows for fluctuation rather than assuming predictable output.
My needs & preferences — Coming soon Care & Support — Coming soonSevere & very severe ME/CFS Support may need to come to the person.
Severe or very severe ME/CFS can substantially limit movement, communication, personal care and tolerance of light, sound or touch.
Someone who is very unwell may need help with eating, washing, toileting, medication, communication or other basic needs.
Care may need to be provided at home or in another environment adapted to the person’s tolerance.
Keep visits, questions and sensory stimulation appropriate to the person’s capacity. A person who cannot speak or interact normally may still understand what is happening around them.
Severe illness requires individual clinical assessment and a coordinated care plan.
Diagnosis & professional care ME/CFS is diagnosed clinically, not by one test.
If you think you may have ME/CFS, discuss your symptoms and changes in function with a GP or appropriately qualified clinician.
Assessment may include your symptom history, physical examination and investigations to consider other possible causes.
There is no single blood test or scan that confirms ME/CFS.
Bring examples of delayed worsening after activity, sleep quality, cognitive symptoms, dizziness or orthostatic symptoms, pain and changes in what you can do.
Treatment and support should focus on the symptoms and difficulties that matter most to the individual.
Important: Fixed incremental increases in exercise are not the same as individualised energy management. If activity causes PEM, pushing through it can worsen symptoms.
Prepare for an appointment — Coming soon Care & Support — Coming soonME/CFS & the ALPIMS domains Symptoms can involve several areas at once.
Energy & exertion: physical, cognitive, emotional and social activity can all contribute to total load.
Sensory: light, sound, touch and environmental stimulation may become harder to tolerate.
Anxiety & autonomic: dizziness, palpitations or symptoms related to being upright may require assessment rather than being assumed to be anxiety.
Pain: headaches, muscle pain, joint pain and other pain can add to the overall burden of illness.
Mood & trauma: depression, anxiety, grief or trauma can coexist with ME/CFS and deserve appropriate support.
Immune & illness: ME/CFS can begin after an infection, but the cause and mechanisms are not fully understood.
These are practical connections, not proof that one domain causes another. ME/CFS does not explain every symptom.
Explore the ALPIMS domains — Coming soonMore tools & resources Choose one next step.
Sources & further reading Official information behind this page.
The practical prompts on this page are ALPIMS suggestions, not validated diagnostic tools. Medical assessment and treatment should be individualised.
About this information & your care General information and individual choice.
This page does not diagnose ME/CFS and does not replace individual medical advice.
ME/CFS can fluctuate substantially. A strategy that works on one day may not be appropriate on another day.
Do not use this page to push yourself through symptoms or to set a fixed exercise target. If an activity repeatedly causes PEM, discuss the pattern with an appropriately qualified healthcare professional.
Seek medical assessment for new, worsening or unexplained symptoms. Emergency symptoms should be treated as an emergency regardless of whether you have ME/CFS.
Share only the personal information you choose. Before using an online tool, check how information is stored and shared.
For immediate danger or a medical emergency in Australia, call 000.