THE BASIC PRINCIPLES BEHIND SEVERE ME-AWARE CARE :



● Never define the person by their behaviour.
● Acknowledge the serious and severe physical illness underlying the person’s symptom experience.
● Adhere to a strictly defined definition of ME (The International Consensus Criteria).
● Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.
● Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.
● Honour what the person says regarding their physical and cognitive needs.
● Listen to the person and only interact at the correct time in the correct way. 
● Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.
● Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. 
● Maintain a flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred rather than goal -oriented approach at all times. 
● Be aware of the after impact of any interaction; something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.
● Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. A biomedical response and care pathway is essential. 
● It is vital to ensure that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.
● ME is not easy to understand, help people to understand it! 
● ME is misrepresented as Chronic Fatigue, make sure you represent it as a neurological disease!
● ME is a complex disease where the most severely affected are the most hidden and misunderstood, make sure you speak the truth for them!
● ME is being compromised away, never compromise, lives are at stake!
● Know that the person you care for has a physical disease, one that most likely is not getting the medical support it needs. Everyone deserves correct medical support and excellent care!
(From "Caring For ME, a Pocketbook Course For Carers".
http://stonebird.co.uk/CARE/index.html)

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