ME/CFS is a complex chronic illness that can affect many parts of daily life — energy, thinking, sleep, pain and the ability to manage everyday tasks.

Symptoms may not be visible, and capacity can fluctuate from day to day. Looking well does not show the full impact of the illness.

One of the most important things to understand is post-exertional malaise, or PEM. Physical, cognitive, emotional, social or sensory exertion can be followed by a significant worsening of symptoms — sometimes immediately, and sometimes with a delay.

This is part of the illness, not a lack of effort or motivation.

Capacity may change unexpectedly. Someone may manage something one day and not another.

Cancellations are not necessarily a lack of interest or effort — they are often a response to symptoms, made reluctantly.

• Ask what would be genuinely useful, rather than guessing.
• Offer specific, practical help — one task at a time.
• Keep visits flexible, and shorter where that helps.
• Reduce noise and extra input where you can.
• Understand that shorter contact may be more manageable.
• Do not pressure someone to explain every limit repeatedly.

Some well-meaning approaches can add pressure rather than reduce it. These can include:

• Pushing someone to do more than feels manageable.
• Assuming that resting means they are improving.
• Comparing them with someone else's illness or recovery.
• Repeated, unsolicited treatment advice.
• Expecting immediate replies.
• Treating fluctuating capacity as inconsistency of character.

Connection often matters most when it is hardest to sustain. Small, low-pressure contact can help someone stay included without adding demand.

• Short messages with no need for a reply.
• Flexible visits that can end early.
• Invitations without pressure to attend.
• Understanding cancellations when they happen.
• Continuing to include the person, even when they cannot join in.