How to Care, really Care, for Someone with Very Severe ME


Poor care practice combined with a lack of understanding,  knowledge and insight into how to approach someone profoundly physically ill, with acute, multiple environmental hypersensitivities, places people with Very Severe ME at particular risk of abuse and harm.

The  impact of any intervention, which can be catastrophic, makes Very Severe ME a  complex illness in which to provide safe and sensitive care.

This document is intended to increase awareness and to help raise standards of care.

Comments

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years younger ! http://pss.sagepub.com/content/22/11/1359.full.pdf+html The bad new
Read more

THE STONEBIRD DEFINITION OF SEVERE ME

Image
Severe ME is a hellish experience that you live and endure without treatment, cure or respect. Severe ME is not knowing how to cope from minute to minute, moment to moment. Severe ME is being tormented by people doing ordinary things. Severe ME is being inhibited by paralysis. Severe ME is being totally ill, all the time. Severe ME is being unable to read. Severe ME is being unable to hold anything. Severe ME is falling over regularly. Severe ME is your mind not working. Severe ME is being unable to speak on the phone. Severe ME is finding that going to bed or remaining in bed makes you feel even more ill. Severe ME is discovering that there is no possibility of rest, ever. Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive. Severe ME is not knowing what to eat that won't hurt you. Severe ME is being neglected by the Health Service. Severe ME is having to regularly have to prove you
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un
Read more