FOCUS ON THE MOST SEVERELY AFFECTED

WHY A MOMENT APPROACH IS REQUIRED :

People with Severe ME are roughly 25% of the ME population.

People with Very Severe ME are roughly 2% of the ME population.

For them there is little comprehension of what they go through or how to safely help and interact with them.

Some will be more able than others, in limited ways. People’s experience may vary from day to day and moment to moment but always in the context of severe illness and multi-system dysfunction.

For some there is no let up to the high intensity of their symptoms. Their needs are complex.

There are a number of paradoxes that may only become apparent when you try to engage with the person.

I need help, but.... there is always a but, especially with those people who have the most severe forms of Severe ME.

Receiving care is not easy, straightforward, nor is it necessarily obvious as to how and when to interact
safely and in the best way for the person.

Everyone experiences their symptoms uniquely, yet there will be common experiences and common difficulties in accessing care.

It is difficult to be cared for without causing additional problems.

The symptom experience is unimaginable to those who have never known it, the level of tormenting hypersensitivities to ordinary things indescribably disturbing and
assaulting, adding to the difficulty of getting safe and supportive, experienced care.

FOR MUCH MORE INFORMATION ON HOW TO CARE FOR SOMEONE AT THIS LEVEL OF ILLNESS - PLEASE SEE:

https://stonebird.co.uk/Paradox.pdf