Severe ME Day

It has been a beautiful Summer's Day here, my wife, Linda, though has spent it in the dark, behind thick sound proof curtains.  Her hypersensitivity to the environment has reached frightening levels .

The scandal and injustice surrounding ME is a deep pain. We can only pray that maybe Severe Myalgic Encephalomyeltis Understanding & Remembrance Day next week, August 8th makes some kind of impact.

 To that extent I have just launched Stonebird's webpage :

 http://www.stonebird.co.uk/understand/html/index.html

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

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

I just don't get it !

Image
Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it. To me its a life and death matter. If you don't wake up and open your eyes to what is going on in the UK, we will never get proper medical treatment and health respect for people with Myalgic Encephalomyelitis (ME).   People will continue to take their own lives from sheer medical neglect and people will continue to deteriorate and die from wrong or no treatment. It seems to me that there is almost total confusion surrounding the illness ME because of the use of the term CFS. Some people may have been diagnosed as CFS, others as CFS/ME, others as ME or ME/CFS.  Some will have self -diagnosed themselves, others will have seen a GP, some will have gone to a CFS clinic and some if they have been ill long enough may have seen one of the few knowledgeable , who, I would term as 'old school ' ME consultants who knew or knew of Ramsay and h
Read more