Within ME there are a range of complex physical symptoms and system dysfunctions, all affecting the 'how' and 'when' a carer interacts with the person; getting it wrong can lead to enormous harm!
To care safely and effectively for someone with Myalgic Encephalomyelitis, carers absolutely must:
1. Be aware that ME is a neurological disease with multi-system dysfunction.
2. Always trust and listen to the person and their reaction.
3. Be sensitive so that they can gently approach and offer care to the person without causing distress or deterioration.
4. Adopt a moment - by - moment, flexible approach to care, where the carer is willing and able to wait patiently and return later. The response of people with Severe ME is not always predictable; often the opposite rather than the expected occurs.
This must be FULLY understood by the carer.
5. Be aware that it might not be possible, in any one moment for the person to receive the help they need, because they are so physically ill. In other words, the carer must be able to recognise that there may be a moment when the person can or might tolerate an intervention and other times when that simply will not be possible.
Even if an intervention is not possible at one moment, it may still be possible at some other point in time, for there are fluctuations of experience of symptoms within the general chronicity of the illness.
Any task or interaction needs to be at the pace that is tolerated by the person, never imposed by the carer;TIMING IS KEY.
6. Be aware that a person with ME, particularly the most severely affected, may have complex hypersensitivities to the environment.Any action that might result in triggering these or other hypersensitivities, can lead to serious exacerbation of symptoms, make the person’s experience intolerable and/or cause long term deterioration.
7. Be aware that the person with ME may have severe cognitive dysfunction, may not be able to write or read , speak, understand or cope with questions. A very gentle approach is essential in caring for people who have Severe/Very Severe ME.
8. Be aware of the need to be quick and efficient, to minimise risk of deterioration or distress, yet at the same time, being very quiet and careful.
Remember how YOU DO A TASK is as important as WHEN you do a task.
9. Understand that people with ME can easily over exert themselves, trying to get even their most basic health or care needs met and, as a direct consequence decline.
10. Have integrity, wisdom and patience. Any improvement or response may be extremely small, almost invisible perhaps to the carer, yet the person with Severe/Very Severe ME may discover extraordinary benefit from what might seem like a small, even insignificant outcome.
Great wisdom and skill is required.
I cannot stress enough how you HAVE to be fully aware just how seriously ill the person with Severe/Very Severe ME is and respect that in ALL you do.
Greg Crowhurst December 2018


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