The Great Myth

Another day - and Linda, in atrocious suffering,  somehow has to cope, find meaning, get through each tortuous moment. 

 If only, she says, she could understand her body, what is happening; is that too much to hope for ? 

 The hell, she exists in, cannot be described.

 There is a  GREAT MYTH in ME world : : everyone says, oh there is no research, we can't do anything until we have done the research. 

 NO !!!

 People need clinical support, biomedical  input RIGHT NOW. In what other disease would you be left with absolutely  nothing, no input, no service provision, because there is not enough research ?

 The medical knowledge IS there, right, here, right now  ! After all this time,  we have figured out a great deal by ourselves; we  have a pretty sophisticated idea what to look for - but the great big CFS machine always gets in the way, the one that writes  people with Severe ME off as not worth bothering with, in the eyes of the medical profession !

 Because  of  endemic  misinterpretation, misrepresentation and misdirection people with Severe ME  literally are being left to "rot"without proper medical support, without the respect given to other neurological diseases.

 Plus there is an  almost complete lack of understanding how to engage with and provide a service to people with Severe ME who require an ultra aware,  flexible, sensitive, specialist approach.

 It is time for a change !!!

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 young...
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

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more