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Severe ME : Notes for Carers QUOTES

Severe ME : Notes for Carers QUOTES

1 " How do I validate him in the face of such profound personal loss and the outrageous denial by the medical community? "

― , Severe ME : Notes for Carers

2 " How do I deal with my own frustration and outrage at the injustice of what has happened to my son and all ME patients and with my own inadequacies and inability to change that? "

― , Severe ME : Notes for Carers

3 " All I ask of all my friends is that they understand this is truly a devastating neurological illness and not just about being a bit tired because its way and above beyond that.

One day ME will be unravelled by the many researchers working tirelessly around the world I hope it's in my lifetime! "

― , Severe ME : Notes for Carers

4 " I have seen three beautiful young girls in their 30's within the last few years pass away due to this illness, who not only fought their battles with this illness but who played an important role in raising awareness of ME.

Yes you can die as a result of having ME if you become at the severe end of it which
25% do. "

― , Severe ME : Notes for Carers

5 " I wake up every morning, thinking that this can't really be happening. What parallel universe have I entered? "

― , Severe ME : Notes for Carers

6 " Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help. "

― , Severe ME : Notes for Carers