Suggested categories
A structure helps scanning on a foggy day. These five categories cover most of what people find themselves explaining to others:
Communication
- One question at a time
- Extra processing time before expecting an answer
- Written information rather than spoken instructions
- Text messages rather than phone calls
Sensory environment
- Lower lighting — lamps rather than overheads
- Less background noise — one conversation at a time
- Fewer people speaking at once
- Reduced screen use, or larger text on screens
Physical comfort
- Lying down, or a reclined position rather than sitting upright
- Supportive pillows, arranged without needing to ask
- Sitting rather than standing wherever there is a choice
- Essentials kept within easy reach — water, medication, phone
Daily tasks
- Help with meals, or meals that need no preparation
- Deliveries instead of trips out
- Shorter visits, agreed in advance
- Help with laundry and household basics
- Fewer decisions to make on difficult days
When symptoms are worse
- Quieter communication — short sentences, or written only
- Essentials nearby so nothing needs fetching
- Non-urgent tasks postponed without needing to explain
- Practical help rather than conversation
These are examples, not a template to complete — most people's list is shorter, and distinctly their own.
What helps can change
A useful support one month may not suit another period. Capacity changes, seasons change, and the same environment that felt calm in winter may feel isolating in summer. A list like this works best as a living note — revised when circumstances change, without ceremony, and without treating an old entry as a commitment. What helped last year is information, not obligation.
The wording matters
Because this is a record of preferences rather than treatments, the language stays practical:
- “I find this easier” — not “this calms my nervous system”
- “This reduces demand” — not “this prevents crashes”
- “This is more comfortable” — not “this heals” or “this improves circulation”
- “I prefer…” — which needs no justification at all
The practical versions are not just safer — they are also clearer for the person reading them, who mostly needs to know what to do, not a theory of why it works.
What does not help
The other half of the record, and often the more useful half. Written down, it spares both sides the repeated conversation:
- Repeated questions
- Unexpected visitors
- Bright light
- Being rushed through a task or a decision
- Too much advice, especially when unasked for
Kept respectful and matter-of-fact, a list like this is not a confrontation — it is information, offered the same way the “what helps” list is. Most people around someone with this illness want to get it right, and are genuinely relieved to be told how.
Turning it into something a supporter can use
A What Helps Me list is your own reference. When it needs to become something another person can act on quickly — a single page that tells a carer or family member what support looks like on a bad day — the My Support Plan page turns it into that. The two work as a pair: this page notices, that one communicates.
At the severe end
At lower capacity the list becomes both more important and harder to communicate verbally — which is exactly why writing it down on a better day matters. Preferences still exist when the energy to state them does not: which side to lie on, whether curtains are open, whether today is a listening day or a silent one, which support is welcome and which kind of help is not. For someone with very severe ME/CFS, a written record of these preferences can be the difference between support that respects the person and support that merely manages the patient.