This video could save your life !




My heart goes out to anyone newly diagnosed with "ME", Myalgic Encephalomyelitis, for you are instantly thrown into a wilderness; a barren, terrifying land populated by rogues, charlatans, scoundrels and  tricksters, who will do you enormous harm, if you let them.

Their clamoring nonsense,  to exercise, to take brisk walks, to push yourself through the illness and so on, or pay for their great "cure"  are almost guaranteed to make you much worse, they could even confine you to bed , with multiple symptoms, for decades.

To save you from disaster, you need  wise advice and quickly. I can think of no better resource than Sally Burch's excellent video presentation; it could, literally save your life.

As Sally explains, the advice that you need, right here, right now,  is most likely to come from fellow patients, rather than from the medical profession.

I have been caring for my wife with very Severe ME, for more than two decades. I have to say that it took me at least eight years to even begin to unravel the hostile situation we found ourselves in. If only we had had access to Sally's presentation back then : but that was in the days  before the internet existed.

It takes great discipline, maturity and enormous focus, not just to rant, but to convey the reality of ME in a professional, balanced, intelligent way; one that will speak as much to professionals as it will to patients; Sally's video achieves that on all counts - it is extraordinarily clear and so easy to follow.

As she writes on her blog : it is as if people with ME "have been swept into some dark corner labelled "Beyond Help"!! In a bold, innovative and confident way Sally Burch has done a great deal in this video to highlight the role of patients as a much needed resource.







Comments

  1. Sally BurchSeptember 14, 2015 at 12:19 AM

    What can I say Greg!!! A review like this from you means everything! Thank you for agreeing to feature in the presentation, and also for sharing it on Stonebird. :)

    ReplyDelete
  2. Tony's GolfJanuary 2, 2016 at 1:48 PM

    This comment has been removed by the author.

    ReplyDelete
  3. Tony's GolfJanuary 4, 2016 at 4:00 AM

    I think it is very encouraging so see Sally make headway in NI I have some time now I am retired and would be happy to help anyway campaign to get similar treatment in the UK.
    Re the concept of "systemic exertion intolerance disease" to me this seems a positive step forward, its simpler definition may make it easier for people to be diagnosed and may well be a way for the NHS to move forward...

    ReplyDelete

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