The person diagnosed with Severe/Very Severe ME is not having the same experience of the world as you are; that is so hard to understand and to deal with.
The care someone at this level of illness requires is complex, multidimensional and holistic. It takes enormous empathy, understanding, skill and commitment.
At all times you need to be aware of the person, of the environment – and especially in Very Severe ME, profoundly aware of the interaction between them.
An ability to cope with your presence or help can so easily suddenly shift and change without warning. Try to learn any signs!
Here are a few ways you can really make a difference :
1. Never, ever think that that you know better about the person’s reality/experience than they do themselves - accept what they say, when they describe it to you
2. Always aim to be fully aware of the person.
3. Don’t let your needs and thoughts distract you or get in the way of providing good care.
4. Aim to be present in each moment, to sensitively meet need.
5. Never try to meet other people’s needs and demands, to the detriment of, or in conflict with, the person you care for’s needs.
6. Don’t take things personally if you get an unexpected, irritated or upset reaction from the person; try to understand their reality and the impact you may be inadvertently having on them.
7. Try to be very still and careful in yourself, in your thoughts, words and actions; try to find out from the person how they need you to be with them, in the most sensitive way.
8. Be fully aware of the person’s specific hypersensitivities and how you might impact upon them.
9. ALWAYS do what the person asks you to do, in the precise way that they require it to be done.
10.Never lose awareness, even for a micro-second, of the impact that you can have upon health and symptom deterioration; so easy to unintentionally affect through the slightest wrong movement, action, noise or intervention, wrongly timed or wrongly done.
For much more information on how to care for someone with Severe /Very Severe ME, please see my book:


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