FOCUS ON THE MOST SEVERELY AFFECTED

WHY A MOMENT APPROACH IS REQUIRED :


People with Severe ME are roughly 25% of the ME population.
People with Very Severe ME are roughly 2% of the ME population.
For them there is little comprehension of what they go through or how to safely help and interact with them.
Some will be more able than others, in limited ways. People’s experience may vary from day to day and moment to moment but always in the context of severe illness and multi-system dysfunction.
For some there is no let up to the high intensity of their symptoms. Their needs are complex.
There are a number of paradoxes that may only become apparent when you try to engage with the person.
I need help, but.... there is always a but, especially with those people who have the most severe forms of Severe ME.
Receiving care is not easy, straightforward, nor is it necessarily obvious as to how and when to interact
safely and in the best way for the person.
Everyone experiences their symptoms uniquely, yet there will be common experiences and common difficulties in accessing care.
It is difficult to be cared for without causing additional problems.
The symptom experience is unimaginable to those who have never known it, the level of tormenting hypersensitivities to ordinary things indescribably disturbing and
assaulting, adding to the difficulty of getting safe and supportive, experienced care.
FOR MUCH MORE INFORMATION ON HOW TO CARE FOR SOMEONE AT THIS LEVEL OF ILLNESS - PLEASE SEE:

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