BEYOND CATASTROPHIC : PARALYSIS IN SEVERE ME


If I make an unexpected noise or movement, no matter how slight, or cause any kind of unexpected
shock, the impact upon my wife, who has Very Severe ME is way beyond catastrophic.
In the diagram below we have tried to show the possible triggers : just about anything!
It is the greatest possible pain to see my wife's whole day totally destroyed by something apparently small and insignificant that I have done; the hour upon hour - if not days of intense naked suffering that follow.
YOU HAVE TO ULTRA AWARE AT ALL TIMES, as carer!
As the diagram shows, it is not just my actions. Sleep, rest, sitting are also common triggers.
Yet, paralysis, which was frequently mentioned by the early authors, especially Ramsay, is rarely if ever mentioned today by clinicians.
WE DO NOT UNDERSTAND WHY; our own studies have shown how common paralysis is, especially in Severe ME.
On Stonebird the recognition of paralysis in ME is our defining mission.

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