ME/CFS and long COVID
Supporting someone with ME/CFS or long COVID
Know what to say tonight. Have a pacing and crash plan together in four weeks.
24 situations with what to say · 24 straight answers · a 4-week plan with something to do together each session · 10 cards and plans · with Family: short videos to share with the rest of the family
Reviewed 2026-11-09 · next review 2027-11-09
The 4-week plan
Week 1
Understand and believe
- What's really going on
- A day from the inside
- "Just push yourself"
Week 2
Talk
- Validation: the skill that helps most Free
- What to say instead Free
- When it goes wrong
Week 3
Plan together
- Pacing within the envelope
- Help without taking over
- Crashes and the crash plan
Week 4
Family and you
- The two of you
- Children and the wider family
- Looking after yourself
Right now: situation cards
- They cancelled plans again Free
- They're in a lot of pain right now Free
- They snapped at me
- They're crying and I don't know why
- They say "I feel useless" or "I'm a burden"
- A relative says they just need to push themselves Free
- Someone says "But they look so well"
- There's a family event tonight
- The children are asking questions
- There's a doctor's appointment tomorrow
- They want to try a treatment I'm unsure about
- Sex and closeness have stopped
- It's a good day and they want to do everything
- They have a new or different symptom
- I'm angry, and then I feel guilty Free
- I'm running on empty
- Part of me doubts it's that bad
- They talk about not wanting to live Free
- They've crashed Free
- It's a better day and they want to do more
- Someone says they just need exercise Free
- People want to visit
- Light and noise are too much today
- They feel faint when they stand up
Toolkit
- Say this, not that
- ME/CFS and long COVID: myths and facts
- What I need on a bad day
- Our weekly check-in
- Our week: energy envelope planner
- Who does what
- Our crash plan
- Questions for the appointment
- Explaining ME/CFS to children
- Where to find help
With Family
- Four extra logins for relatives
- Share links to the short videos for anyone who doubts
- A story to read aloud to children
- Letter templates for work, school and family
Questions families ask
- Is ME/CFS a real illness?
- What causes ME/CFS?
- What is post-exertional malaise?
- How is it diagnosed?
- Is long COVID the same as ME/CFS?
- Will they get better?
- What is severe ME?
- What is a crash, and what helps?
- Is it my fault, or theirs?
- Can children get it?
- Why doesn't rest fix the tiredness?
- Why do they feel faint when they stand?
- Why can't they concentrate?
- Why are light and noise so hard?
- When is it not "just the ME"?
- What actually helps?
- What is pacing, exactly?
- Why not exercise? Isn't exercise good for everyone?
- So should they just rest all the time?
- If they're offered CBT, does the doctor think it's in their head?
- Are there medicines for it?
- Can they keep working or studying?
- What about sex?
- Where can I get support for myself?
Free to read
The start, two sessions on what to say, 7 situation cards, 6 questions and the card "Say this, not that". Open them in the app; no payment needed.
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