With Severe ME, it may not be enough to want to help, it is knowing:
1.When to help
2.How to help
3.What does not help.
There is a great need to be flexible, to be able to stop, if asked, to come when needed, to be willing to try again, to wait and to try again patiently if the person cannot cope with the interaction in any one moment.
The person with Severe ME needs what they need, when they tell you, in the moment that they tell you.
Their need may often be extreme and require an immediate response, in order to try and avoid symptoms deteriorating.
You have to constantly remember and be aware that the reality of the person with Severe ME is hyper-sensitised and their experience of the world is not the same as yours.
Here are six essential skills you need, to care for someone with Severe/Very Severe ME :
The skill of listening to instruction and following it accurately.; I cannot stress enough how critical this is.
The skill of understanding how to be with someone with profound noise, light, touch, chemical and motion sensitivity, without triggering a reaction.
The skill of moving gently, quietly, flowing gracefully with the person’s energy so as not to trigger deterioration.
The skill of physical contact that is appropriate to the level of pain and hypersensitivity.
The skill of honest self-reflection, awareness and understanding.
The skill of timing, knowing when and when not to act.
The most important thing of all is to be constantly vigilant of all the things that can and might go wrong, as well as all the ways that you can maximise the opportunity to meet the person’s need as tenderly as possible.
For a self-reflective guide on how to care for someone with Severe ME please see :


Popular posts from this blog

Linda's response to the BMJ

The psychiatric abuse of Children with ME

We Remember: A poem for 8th August, Severe ME Understanding and Remembrance Day