An excerpt from my new book More Notes for Carers:Communication in Severe ME

Excerpt From

More Notes For Carers

Greg Crowhurst


EVERYONE NEEDS TO COMMUNICATE in order to get their needs met, whether it is asking a question, relaying information, interacting with others for work or other business or building relationship, for pleasure and personal fulfillment.

How easy, then, you might think, to say what you mean and mean what you say.

Yet even in the ordinary world understanding and meaning can be unclear, confused and not as straight forward as you might hope, depending on how well you articulate your information, as well as how closely the person is listening to what you are saying and also how they interpret what has been said or conveyed.

Feelings too can be hard to identify and difficult to express.

When a person seeks to communicate with someone who has been diagnosed with Severe or Very Severe ME, communication difficulties are greatly increased.

For the person, disabled by Severe or Very Severe ME, there are likely to be multiple and variable breaks to communication.

Complex symptoms and system dysfunctions interact to cause breaks in:



retrieval of information




processing of information

two-way interaction

…resulting in an inability to type, explain, think, remember, speak when needed, use the phone, hold an implement to write, read or comprehend incoming information.

In other words all the taken for granted ways of communication for the ordinary person living in the world, are often or always blocked or difficult for the person with Severe and particularly Very Severe ME.

This makes meeting every day need, let alone bigger needs, extremely challenging or impossibly painful and hard to achieve.

The most important lesson you can learn, perhaps, is that you cannot make any assumptions.


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