Communication Supports in Severe ME

 

Severe Myalgic Encephalomyelitis (ME) includes the ranges Severe, Very Severe and Profound

For someone with Severe ME, communication can be challenging due to the immediate post exertion response, limited cognitive ability, and difficulty with speech or writing.

When communication between a Severe ME patient and others is challenging, it is crucial that the carer/nurse/advocate would set up a unique and individualised communication system for the patient to be able to indicate their choices and needs.

Resources and Strategies

- choice will depend on the individuals' needs

Communication Aids and Tools

- Voice-activated devices

- Assistive technology apps

- Communication boards and books

- Using a computer or phone for communication

Strategies for Supporting Communication

- Clear and concise communication

- Patience and understanding

- Visual aids

- Use a notepad or whiteboard

Key Considerations

Individualized approach: Communication strategies should be tailored to the individual's needs and abilities. What works for one person may not work for another.

Flexibility and adaptability: Be prepared to adjust communication strategies as needed, as the individual's condition and abilities may change.

Family and friends: Involve family and friends in the process of supporting communication, as they can play a vital role in understanding and accommodating the individual's needs.

Communication Cards

One useful resource which could be used along with an individualised system of communication specific to the needs of the Severe ME patient are Communication Cards linked here: Communication Cards

Severe ME Communication

A guide to effectively and compassionately communicating with someone who has Severe or Very Severe Myalgic Encephalomyelitis (ME) by Severe ME carer Galen Warden: Severe ME Communication

Stonebird Website

Greg Crowhurst writes about caring in Severe ME from his own experiences caring for his wife Linda Crowhurst and from the point of view of Linda’s experiences being cared for.

Please see Greg’s various posts on ways to approach and care for someone with Severe ME on his website 'Stonebird' linked here: Stonebird Website

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