BUILD A MATRIX OF TRUTH

You are negated as soon as you step into the world of ME.

Suddenly you find that people don't believe you are ill, that people will deny you have a neurological disease, suddenly you won't receive the same respect you used to have.

Friends and family and professionals will not understand your illness, will actually negate your experience, will blame you for your illness.

You will find little or no help from the medical profession.

You will find your symptoms are not tested or treated.

You will be left struggling to find ways to cope and find a voice to drown out the negation of the world.

Even so, there is a sense, as never before, that the tide is finally turning. Voices From The Shadows, the #Missing Millions Campaign, Unrest, the widespread media coverage that Clare Norton and Sophie Cooklyn are bravely generating, these films, that people's movement, those individual voices bravely speaking out, all affirm how powerful the truth of ME is, once it's heard.

Up against mega powerful, influential, wealthy, self-interested forces determined to carry on perpetuating the misinformation, denial, discrimination, misinterpretation that has been destroying lives for decades, our only weapon is truth.

In this presentation we show how very important it is for us all to build a Matrix of Truth; especially at this time!

http://stonebird.co.uk/Notes/index.html
http://www.stonebird.co.uk/severemebook/severeme.html
http://stonebird.co.uk/emptyair/index.html (free eBook)




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