Believe the illness and the limits
Someone with ME/CFS can look completely well, especially on a good day or for the short time you see them. What you don’t see is the crash a day or two later, or the rest they did beforehand so they could see you.
Encouragement to “push through”, “get out more” or “do some exercise” reliably makes ME/CFS worse. Even when it’s meant kindly.
Practical ways to help
- Take things off their plate without being asked: meals, groceries, errands, cleaning, hosting, school runs.
- Take on the admin. Forms, phone calls, appointments, insurance and support applications are cognitively exhausting. Taking over life logistics is one of the most helpful things you can do. Clinicians consider it part of treatment.
- Keep visits short and low-key. Let them end a visit early without having to explain. Noise, bright light and long conversations are draining.
- Communicate in low-energy ways. Text instead of calling. Don’t expect quick replies.
- Come to appointments to take notes and help advocate.
- Help with tracking, e.g. noting what they did and how they were the next day.
Protect them from infection
A new infection, especially COVID-19, is the most common trigger for a major relapse. Stay away when you’re unwell, even mildly, keep up with your vaccinations, and consider a mask before visiting.
Route “cures” through one person
It’s natural to want to share articles, supplements or treatments you’ve heard about. But a steady stream of “have you tried…?” is exhausting and can create false hope. Send ideas to whoever is coordinating their care so they can be checked against the evidence first. This site’s evidence labels can help.
Expect a slow timeline
- Supplements take 8–12 weeks to judge
- Tests take weeks, specialist appointments take months
- Stopping a decline is the first win. Recovery, where it happens, is usually slow and uneven.
A good day doesn’t mean they’re better. Please don’t use it as a reason to expect more. See the good-day trap.
Things that help to say
- “I believe you.”
- “You don’t have to explain. Rest if you need to.”
- “I’m going to the shops. What can I grab for you?”
- “I’ll keep this short.”
- “I’m feeling a bit off, so I’ll stay away this week.”
Things to avoid saying
- “But you look so well!”
- “Have you tried exercise / yoga / positive thinking?”
- “I get tired too.”
- “You just need to get out more.”
- “Are you sure it’s not stress/depression?”
Caring for someone with severe ME/CFS
- Reduce light, noise and touch. Speak softly and briefly.
- Plan care tasks in small pieces with rest in between.
- Minimise the number of different visitors.
- Ask what their “must avoid” triggers are, and write them down for others.
Look after yourself too
Caring can be exhausting and isolating. In Australia:
- Carer Gateway: 1800 422 737 (Monday–Friday), carergateway.gov.au, for free counselling, respite and coaching
- Emerge Australia, the national ME/CFS organisation, has resources for families. See Getting care in Australia.