A structure you can hand over
These sections are enough for a plan a family member, carer or friend can read in a couple of minutes. Fill in what applies; leave out what does not. The goal is one scannable page, not a document:
About me
- Preferred name, and how you would like to be addressed
- Key communication preferences — short sentences, written messages, no phone calls
When I am doing reasonably well
- What I may manage on a reasonable day — in plain, unheroic terms
- What support may still help, even on the better days
- What I would rather do for myself, if that is possible
When symptoms are worse
- What may change — less speech, less tolerance of light and sound, more time lying down
- What becomes difficult, or impossible, on those days
- How communication may change — shorter replies, text only, or not at all for a while
What helps
- Practical assistance — meals, drinks within reach, laundry, errands
- Environment — lower light, less noise, fewer visitors
- Communication — one question at a time, no expectations of conversation
Please avoid — where relevant
- Rushing me through tasks or decisions
- Repeated questions when I have already answered
- Unnecessary noise, bright light, or unexpected visitors
- Assumptions about what I want, need or understand
Essential practical support
- Meals and drinks
- Access to medication — where the list is kept
- Pet care
- Children or other dependants
- Transport to appointments
- Household needs — laundry, bins, shopping
Who to contact
- Named people — a partner, family member, friend or neighbour
- When each of them is the right person to contact
For allergies, emergency contacts and crisis procedures, the Emergency & Important Information page covers that side separately — link to it or keep a copy alongside, rather than duplicating it here.
Two sentences worth writing in
“My preferences still matter when I have less energy to communicate them.”
“If I am communicating less, please do not assume I understand less.”
For people with severe and very severe ME/CFS these two sentences carry most of the plan's purpose: capacity to speak, type or gesture may shrink dramatically, while the person inside — with full understanding, firm preferences and the right to be consulted about their own care — remains exactly as present as before. A plan that states this in writing protects it on the days when stating it aloud is impossible.
Autonomy is the point, not a casualty
A support plan is a way of staying in charge of help, not surrendering it. It does not hand decisions to supporters — it tells them how the person they are supporting makes decisions: what to ask about, what to leave alone, what still belongs to the individual even when they cannot act on it alone. Supporters reading the plan should treat it as the person speaking, not as an instruction manual to execute without checking in where that is possible.
Keeping it alive
- Keep it short — one page or less, so it actually gets read on a bad day
- Update it when something changes — a new carer, a changed routine, a different living situation
- Put it where people will look — the fridge door, a photo in a family chat, the front of a folder
- Let it be imperfect — a plan that exists and is rough beats a beautiful one that was never finished
What this plan is not
This is everyday guidance for the people around you. It is not a formal medical care plan, and it does not replace professional care planning or emergency instructions — those belong with the clinicians involved in your care, and in the places emergency services will actually look. The Emergency & Important Information page covers that side separately, and the two can sit alongside each other.