SEVERE ME CENTERED AUDIO PROJECT

Severe ME is a desolate place when you are trapped inside your tortured body.

 Noise sensitivity, in particular is very much ignored or it is acknowledged in passing, but without touching its desperate destruction.

Linda, for example, has been broken, literally, by noise, to the extent it paralyses her repeatedly; she cannot bear to even think about sound. The person with Severe ME can be so vulnerable to the vibration of noise , that it is not just their ears or their head that is affected, but their whole body in unimaginable ways.

 The tormenting impact of noise in Severe ME must never underestimated. If I so much as scratch my face at the wrong moment, the day can be ruined.

 Hyperacusis can seriously damage a person’s health , worsen their symptoms and cause unfathomable distress.

 There is such a desperate need to break the isolation.

 An innovative community audio project is setting out to try and do just that.

 We are not sure how, but we are tremendously excited that this attempt is being made. We are particularly impressed that they have set out to be "Severe ME-centred" : how often do you hear those words ? This is incredible !

 There are very, very few groundbreaking Severe ME Projects in the world .

 The Project is proactively looking for ideas, suggestions.

 We have tried to help by linking on Stonebird. 

https://invisible.gut.media/severe-me-centered-audio-project-ee01d29d7972

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