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Showing posts from May, 2015

Looking for ME in the sea of CFS ?

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M.E does not mean :

"Oh dear, I have been thinking the wrong thoughts to get well"
or
 "Oh dear,I am so depressed I cannot face life.
or
 "Oh dear,I must think positive thoughts to ignore my reality
or
 "Oh dear, I let my body get flabby and lazy from deconditioning"
or
 "I have to trick my mind and body into working by pretending to be well"

ME is NOT CFS !!!

The Hidden, Gutting Agony

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I bumped slightly into  Linda's chair, instantly pushing her into complete and devastating paralysis. I
hate to think of the consequences.

 Ironically I am busy working on the new book : Notes for Carers; where I keep writing, over and over again, you HAVE to be  ULTRA AWARE and
careful !

You cannot afford to make mistakes.

..but it is not easy.......

This is the hidden, gutting agony.

The Neglect of People with Severe ME

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Questions are, at last, being asked about the lack of care for people with Severe ME, following the
death of Emily Gregg, a young policewoman, who became paralysed,  bed-bound and spent much of her time in the dark, with ear protectors on,  with  no clear care pathway.

The only available  "specialist" service was located in a locked unit for people with mental health problems.

The West Sussex Coroner conclusion was that awareness and care services for chronic fatigue syndrome were insufficient. She is reported as saying that she will write to the doctor about her “ concern nothing more was done to diagnose her illness."

http://www.chichester.co.uk/news/local/emsworth-police-officer-s-suicide-prompts-concern-over-care-1-6742298

We have been raising the issue of a lack of an appropriate service for people with Severe ME, for years, specifically that :

The most ill and vulnerable who are often too ill to access any service are not getting their basic care needs met :There i…

The harm done through ignorance.

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People diagnosed with Severe ME have to be so careful. It is very hard to find someone who comprehends the risks and dangers of engaging with them, especially because the illness is so hidden, invisible, misunderstood not adequately investigated. 

Once you reach a certain level of the illness there comes a point beyond which people cannot risk investigations. The danger to your health and life is so immense.

 People need help badly, but it needs to be given in the right way. 

The harm done through ignorance is indescribable.