What is required in a genuine Biomedical ME service.

This topic is so important to us that I am going to continue to share some of the ideas published in my new book in the Chapter called, ‘Core Components of an ME service: More Notes for Carers.’

A commitment to better recognise, investigate if necessary, treat if possible and support all symptoms, including paralysis. Typically many symptoms go unrecognised or under described and people are left to get on with them to the best of their ability.

Appropriate care and support for the the acute hypersensitivities people experience. The hypersensitivities found in Severe and Very Severe ME are not well recognised, explained or supported.

Ensuring accountability and responsibility through conducting proper, accurately recorded, sensitive, aware medical Risk Assessments. It is extremely challenging to learn how to safely be with someone with Severe and Very Severe ME without triggering deterioration, even long term harm.

A flexible, moment by moment, not a rigid approach to care, provided by practitioners fully aware that ME is a neurological disease, not a mental health condition.

The provision of a medical help line , specifically for ME or emergency support for those in need.

A person-centred, partnership focussed approach to providing care, taking into account the person’s complex communication issues and severe symptom experience.

Appropriate guidance on how to approach and individually help the most ill in a way that will not cause harm or trigger deterioration or severe symptoms exacerbation,if they can engage at all. It is important to listen to what the person needs and work it out how to meet the need safely. We would not expect the Individual Care Plan to be goal-orientated, rather we would hope it would be realistic, quality-of-life and care-orientated and flexibly provided.

Complete recognition of how inappropriate it is to set goals and tasks for a person with Severe or Very Severe ME to achieve, rather a Care Plan should be about how to avoid deterioration and how to offer practical, quality of life enhancing support.

The removal of "Rehabilitation" as a primary intervention in Severe and Very Severe ME.

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